The Best Way to Taper Oral Prednisone (Steroid) Pills


The Best Way to Taper Oral Prednisone (Steroid) Pills

Prednisone is a tricky drug. There are many sight threatening or life threatening disease that will not respond to anything other than prednisone or other drugs that can cause even worse side effects than prednisone.

I and most MDs I know will not prescribe it unless the disease is very dangerous and can cause permanent loss of vision or death. 

The side effects can vary per patient but as you can read at the below site, many patients have had terrible side effects. 

The best way to taper oral prednisone depends on the following factors:
1. Disease being treated
2. Time patient has been on the steroid
3. Other medical history/illnesses
4. Previous history of reaction to steroid taper
5. Genetics

Here are some examples of how to taper Prednisone. I give my patients my cell phone number when I give Prednisone so they can call me if they start to have a recurrence in their disease or terrible side effects, which indicates the steroid needs to be tapered more slowly. There sometimes is no way to know how fast or slow a patient’s body can taper until the taper starts. 


1. There are no randomized, prospective studies saying which taper schedule is the best. This is because there are so many factors that make each patient potentially different in their withdrawl response.
2. General rules of thumb: If patient has been on Prednisone for more than 7-10 days, a taper is needed. Some MDs feel that If you were on Prednisone for a very short term (i.e. 7 days or less), it is alright to quit cold turkey.” I don’t agree with this and think some sort of taper is safer for patients: but it is patient dependent.
3. See below charts for sample tapers:
a. Option for taper: 10 mg prednisone capsules:  
-take 6 capsules each morning with food for 7 days, 
-then to take 5 capsules for 2 days, 
-4 for 2 days, 
-then 3 for 1 day, 
-2 for 1 day, 
-1 for 1 day then stop.  (Reference: Otology & Neurotology

Issue: Volume 29(4), June 2008, pp 453-460
Copyright: © 2008 Otology & Neurotology, Inc.)



b.  Option for taper: 20 mg prednisone capsules: a little faster for patients who have only been on steroid for a few days. But have patient call if any side effects or recurrence of disease. 
-take 3 capsules for 7 days
-then 2 capsules for 4 days
-then 1 capsule for 4 days
-then stop


c.

http://www.prescriptionmedications.in/2014/10/09/prednisone-taper.html

d.

tbl3

http://lup.sagepub.com.ezproxy.welch.jhmi.edu/content/22/7/697.long




As you can see from below chart most MDs and patients would agree that Prednisone has less potential side effects compared with below drugs which are often need for sight and life threatening diseases.


tbl4

4a. Good review below regarding Prednisone’s side effects.
Just do not agree with: “If you were on Prednisone for a very short term (i.e. 7 days or less), it is alright to quit cold turkey.”
It depends on the patient and factors above about how quickly to stop.


http://mentalhealthdaily.com/2014/06/10/prednisone-withdrawal-symptoms-how-long-do-they-last/



Prednisone Withdrawal Symptoms: How Long Do They Last?

Prednisone is a synthetic corticosteroid drug that is used to treat a variety of conditions including: asthma, adrenal insufficiency, Cron’s disease, inflammatory diseases, some types of cancer, hives, nephrotic syndrome, lupus,Meniere’s disease, and hives. It is also used to help with organ transplants by preventing bodily rejection to the new organ. This is a drug that is also used to help with severe migraine headaches, leukemia, lymphoma, and various types of tumors. It works by replacing steroids that are naturally produced by the body.
Essentially this is a drug that mimics your body’s natural hormones produced from the adrenal glands. When prescribed in significant doses, Prednisone works to help suppress inflammation. In the event that a person’s immune system is attacking its own tissues (as is the case with autoimmune diseases), this drug can help reduce activity by suppressing immune system functioning. It affects the “HPA” or hypothalamus-pituitary-adrenal axis when taken longer than 7 days.
Although Prednisone can be a life saving drug when used to treat certain conditions, others that are on it for a less-significant condition may be extremely unhappy with the drug’s side effects. If you can no longer cope with the side effects as a result of Prednisone use, it may be time to withdraw. Once you have spoken with your doctor about withdrawal and have made up your mind, you will want to educate yourself on the potential symptoms that you may experience upon discontinuation.

Factors that influence Prednisone withdrawal include:

When it comes to any medication, there are factors that influence the severity of withdrawal. Various factors that will play a role in determining how difficult the withdrawal process is include: time span, dosage, individual physiology, and whether you quit cold turkey or tapered. If you experience a very severe withdrawal, it is likely due to one or more of these factors.

1. Time Span

How long have you taken Prednisone? In general the longer you are on this particular steroid, the longer it’s going to take your body to readjust to functioning without it. If you are on it for longer than 2 weeks, it can affect your adrenal glands’ ability to produce cortisol. Therefore your body and brain become dependent on the Prednisone for everyday functioning when taken for an extended period. If you are only on this drug for a couple weeks, you should have a much easier time coping with the withdrawal compared to someone on it for months and/or years.

2. Dosage (2 mg to 80 mg)

Since this drug is used to treat a variety of conditions, the dose that you are taking will depend on the condition that you are treating. The maximum recommended dose per day is 80 mg. Most people are taking somewhere between 2 mg and 30 mg per day. In any event, the greater the dosage you take for an extended period of time, the more severe your withdrawal symptoms will likely be. Someone that is on a very low maintenance dose of Prednisone should have a much easier (and quicker) time withdrawing compared to someone who is on the maximum recommended daily dose.

3. Individual Factors

Since this is a powerful corticosteroid, it likely will result in withdrawal symptoms in nearly everyone that took it for an extended period of time. However, the severity of those symptoms can vary depending on the individual. People that were on very high doses for a long term may have a very severe physiological response upon discontinuation, while others may have less of a reaction.
Just know that what you experience may be more or less severe than someone else – as everyone’s situation is different. One person may recover from their withdrawal within a few weeks, while another may experience aches and pains for months following their last dose of Prednisone. The recovery time varies among different individuals.

4. Cold Turkey vs. Tapering

It is never recommended to quit taking Prednisone “cold turkey.” It is thought that if you quit taking this drug cold turkey from a relatively high dose, it could result in potentially dangerous withdrawal symptoms. If you were on Prednisone for an extended period of time, your body likely has become fully dependent on this drug for functioning and providing cortisol.
Since your body has stopped naturally producing cortisol, stopping Prednisone cold turkey can be a recipe for disaster. Why? Because your adrenal glands may not be able to kick back in and produce cortisol. Therefore it is important to gradually “wean” off of this drug to give your adrenal glands some time to pick back up with natural production.
In order to prevent doing damage and or experiencing a nasty cold turkey withdrawal, some have recommended reducing the dosage of your medication by 5 mg every 7 days. If you are unsure about how to taper, be sure to talk with your doctor and voice any concerns you have. If you were on Prednisone for a very short term (i.e. 7 days or less), it is alright to quit cold turkey.

Prednisone Withdrawal Symptoms: List of Possibilities

Below are some common withdrawal symptoms associated with taking Prednisone. Recognize that these are some symptoms that you may experience upon discontinuation from this particular drug. Also understand that you may not experience every symptom listed below and that the intensity of withdrawal will likely differ based on individual circumstances.
  • Abdominal pain: Many people notice intense abdominal pain when they first stop taking Prednisone. This may be in the form of intense stomach aches and/or burning sensations throughout the stomach.
  • Anxiety: Many people report depression, but a lesser reported symptom is that of anxiety. You may feel somewhat nervous and/or have relatively intense anxiety during withdrawal. It is thought that this is a result of hormonal changes and HPA functioning.
  • Body aches: Many people report severe body aches when they stop taking this drug. These aches may last for weeks following your last dose of the drug. If they become too intense, you should consider tapering more gradually.
  • Decreased appetite: Since Prednisone is associated with significant increases in appetite, when you stop taking it, you will likely notice a major decrease in appetite. You may have constantly felt hungry while on it, but when you quit taking it, your appetite will significantly drop off.
  • Depression: Another common symptom to experience upon discontinuation is that of depression. You may feel very depressed in conjunction with significantly low levels of energy. This is in part due to lack of stimulation. Your adrenal stores need to build themselves back up for you to feel normal. Just know that your brain and body will eventually fully heal as time passes.
  • Diarrhea: Some people report diarrhea when they first come off of this drug. If you are experiencing this, be sure to pick up some Imodium (available over the counter) – it should help ease this particular symptom.
  • Dizziness: This is a common withdrawal symptom from any drug. If you feel dizzy, just know that it should go away within a few weeks. The most intense dizziness should subside after the drug has been out of your system for a week.
  • Fatigue: Most people end up having to deal with extreme levels of fatigue and low energy when they quit this drug. If you feel fatigued, just know that it is a result of your body withdrawing from a drug that it has depended on for functioning for a long period of time. Additionally you no longer have adequate amounts of cortisol to provide the body with energy. It will take some time before these homeostatic levels are reestablished.
  • Fever: Some individuals report having a fever when they stop this drug. This is your body’s way of trying to readapt to functioning without Prednisone. The fever should not last more than a week or so after your last dose. If it persists, be sure to consult your doctor and/or another medical professional and consider a more gradual taper.
  • Headaches: Since this drug actually helps many people with severe headaches, coming off of it may result in even more extreme headaches than initially experienced. Some individuals report constant headaches, while others report full-blown migraines during withdrawal.
  • HPA Changes: Anyone who has taken this drug for an extended period of time will exhibit changes in their HPA (hypothalamus-pituitary-adrenal axis). In other words, the adrenals are no longer producing sufficient levels of cortisol because they have become accustomed to receiving the Prednisone. Therefore even if you gradually taper, it will take your body awhile to get its natural production of cortisol back up.
  • Joint pain: It is extremely common to feel pretty intense joint pain when you stop this steroid. This joint pain is caused by lack of natural cortisol production. In some cases it could be due to inflammation during withdrawal. Avoid excess physical stress and activity until the pain subsides.
  • Low blood pressure: Some individuals experience blood pressure drops when they discontinue this drug. Although it increases blood pressure while taking it, many people experience rapid reductions if they discontinue too quickly. In some cases if blood pressure gets too low, it can lead to dizziness and fainting. Be sure to monitor your blood pressure when you quit this drug.
  • Low blood sugar: Many people experience low blood sugar when they come off of a corticosteroid like Prednisone. You may want to monitor your blood sugars when you discontinue and keep some sweets around in the event that it dips out of the ordinary.
  • Mood swings: People feel fatigued, low energy, and have depression as a result of their withdrawal. It is no wonder that some individuals experience mood swings and/or changes when they quit taking this drug. Just know that these should stabilize when the body heals.
  • Muscle soreness: Some people notice muscle soreness and/or pain that does not go away for an extended period of time. The best thing you can do for yourself is to take some sort of over-the-counter pain relief to help yourself cope with this symptom.
  • Nausea: You may feel extremely nauseated when you originally stop taking this drug. The intense nausea should only last for a few days and then gradually improve. Assuming your doctor conducted a gradual taper off of Prednisone, the nausea should not be long-lasting.
  • Shaking: Many people have reported uncomfortable “shaking” in the limbs including the hands and feet.  This is not as common of a symptom, but one that has been reported that can make life uncomfortable for awhile.
  • Skin rash: In some cases a person may develop a skin rash when they first quit taking Prednisone. Some hypothesize that burning and/or itching skin could be a result of nerve irritation beneath the skin. If you are experiencing a skin rash or irritation, just know that it’s likely from the withdrawal.
  • Suicidal thoughts: When you first quit taking this drug, you may notice that your depression becomes overwhelming to the point of triggering suicidal thoughts. If you feel suicidal at all during withdrawal, make sure you talk to a professional about it. Just know that as your adrenal stores build back up, your depression will gradually subside and your thinking will return to normal.
  • Vomiting: Some people report vomiting when they stop Prednisone. This vomiting is usually a result of tapering too quickly and not giving your body a chance to gradually adapt to functioning without the drug. If you are vomiting, it could just be that you are hypersensitive to withdrawal and/or are withdrawing too quickly.
  • Weakness: It is common to feel muscle weakness and an overall sense of malaise when you first come off of this drug. It should take your body a few weeks and/or months to fully recover from feeling very week and achy. This is just your body’s way of reacting to functioning without a drug that it has received constantly over an extended term.
  • Weight loss: Individuals that are on Prednisone for the long term tend to pack on a pretty good amount of weight. Obviously the amount of weight you gain will be based on your individual circumstances. Most people notice that they begin to lose weight a few weeks after they have fully discontinued this drug.

How long do Prednisone withdrawal symptoms last?

The time it takes you to fully withdraw from Prednisone will depend on individual circumstances. In most cases, the withdrawal symptoms should clear up within 3 to 4 weeks after your last dose. The half life of Prednisone is only 1 hour, but most people report post-acute withdrawal symptoms lasting well after the drug is cleared from the body.  A full recovery can take anywhere from a week or two (lower doses) to several months.
If you are experiencing pretty extreme pain as a result of the withdrawal, be sure to take some over-the-counter pain relief. In addition to OTC pain relief, most people recommend increasing the amount of salt and sugar that you eat. This is because when you stop taking Prednisone, your body usually has low blood sugar and low blood pressure.  If your withdrawal symptoms persist for an extended period of time and/or are so severe that you cannot function, it is likely that you withdrew too quickly.
Anytime a person is on 5+ mg of Prednisone for 7 to 14 days, sudden discontinuation can result in an adrenal crisis. Work closely with your doctor, follow guidelines, get plenty of rest, and lay low as your body and mind recover. Eventually you will return to normal functioning once your body and brain readjust to functioning without steroids.  It should be noted that some people report “Secondary Adrenal Insufficiency” as a result of taking corticosteroids like Prednisone.
In this event, it has taken people 12 to 24 months before they experience full “recovery” back to homeostasis.  As was mentioned, the longer you are on the drug, the more gradual the tapering process should be and the longer you should expect withdrawal symptoms to persist following your last dose.  As long as you work with your doctor and withdraw VERY gradually, you should be able to experience a full recovery.  If you have experienced withdrawal from Prednisone or are currently going through withdrawal, feel free to share your experience in the comments section below.

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{ 162 comments… add one }
  • a July 26, 2014, 7:04 pm
    was prescribed 60mg of prednisone for 10 day then was to tapper off for a concussion. By day 4 I felt as though I was coming apart on a molecular level. (Like Sen. Kelly in the X-Men movie when he exploded into a liquid) By day 5 my joints, muscles and bones hurt like I had been running on pavement for hours. By day 8 called Dr in a whirlwind of emotion and hormonal vomit for lack of a better word. He had me stop with no tapper and I feel horrible. Seriously hope these effects do not take months to stop
    • Darlene September 22, 2014, 8:16 pm
      I have also went through “short term” prednisone withdrawl hell. What a nightmare. It has been 4 weeks since I stopped . I tapered a few days earlier as I couldnt stand to be on it. I ended up in Er with prednisone induced gastritis that messed me up amongst the other problems it created . All because of poison oak!!!! I regret EVER taking it. I wander if I will ever be back to mormal and if so WHEN? I lost 12 lbs in less than 2 weeks due to not being able to eat and being so nauseous with diarrhea. I thought I was dying. I had teh shakes coming off MAJOR amplified anxiety. I cannot believe doctors are so in denial about the after effects of this drug and what it really does. NEVER again. I also had to take a shot and a 5 day course which ended up being a 4 day course becasue family doc would not prescribe a few more pills over the Urgent cares script. Then they had me do teh 12 day taper that I ended on day 8 due to problems being on it. I also peed alot and it made my bp go up. What an evil drug.
      • Hilary September 24, 2014, 2:11 pm
        I am going through the same thing, and I just figured out it was prednisone that was causing my issues. I had gotten stung my a caterpillar and was covered in hives. My rheumatologist gave me a 5 day Medrol pack to stop the itching. It worked, but I have been having nighttime tremors throughout my body and now bad pain in my neck, ear and skull. I feel terrible. My anxiety level is high, due to worrying about my health so much. I feel like I am dying inside.
        • Boost November 11, 2014, 9:36 pm
          Going through the same thing. My anxiety level is high also. Glad this site is here for us prednisone users to share our experiences. I feel a bit better just by reading others posts. Wishing you all the best of health.
  • TDM August 23, 2014, 11:05 am
    Prednisone is poison. You will find doctors out there and online who continue to say that it is a perfectly wonderful drug for many things. I was given Prednisone for poison oak. I already had severe PTSD from a horrific trauma. I told the nurse practitioner and she told me there were “very few side effects” to prednisone. This is a lie. When I told my allergist this, she told me that there are so many side effects to Prednisone, they don’t even know what they all are.
    She told me that someone like me should have been warned and that my Psychiatrist should have been called immediately. Instead, I was given a muscle relaxer to take three times per day and had to take more of my anti-anxiety than normal. Even with those things, this has been a nightmare. I have thought about suicide, it is so awful. I will never touch this drug again. I am thinking of having every part of my landscaping removed so I can never come in contact with poison oak/ivy again. Prednisone hijacks your central nervous system.
    If you continue to search and see what HUMANS say instead of these doctors who are obviously getting kickbacks for giving us this poison, you will see that the incidents involving mental and physical breakdowns from this stuff is far higher than 5%. Do not take this. If I was ever in a health crisis and told to take prednisone or die, I would choose death. While withdrawing, I am having worse PTSD nightmares than I have ever had.
    • Beverly Galante August 30, 2014, 9:34 pm
      TDM, I just read your post again. I think that you could have taken mucho doses of Vitamin C for your allergy to poison oak/ivy. I’m so sorry this doctor was stupid enough to give you prednisone. I had a severe allergy to a medicine given to me at a hospital for a problem that they caused. I broke out like a Christmas tree. My husband called my naturepathic doc and he prescribed heavy doses of vit. C and it was gone in 3 hours. Let me tell you, I was BAD! It had me screaming into a pillow until finally the vit C kicked in. I hate doctors. I think that unless I am dying, I will just keep going to my naturpath. I take suplements now. I pray my symptoms of muscle pain, join pain and stomach aches go away soon. And good luck to you. Please know that even if I don’t know you, that you are loved. And don’t worry, you will get your health restored very soon.
    • Darlene September 22, 2014, 8:19 pm
      I too went through hell from having poison oak and being put on this prednisone garbage. It has messed me up. The doctors are idiots and think a short term course does nothing. I ended up in the ER from prednisone induced gastritis and weigh less now than before I started that evil drug from being so sick and not being able to eat after coming off and diarrhea. NEVER again.It has been 4 week and getting better but I am not myself as I was before. I had major anxiety and thought I was dying and still wonder if I am.
      • Andrew September 24, 2014, 7:28 pm
        Darlene,
        I feel the exact same way you feel. I was on this drug for two weeks. And had to stop because of anxiety. I have been off for a little more than two weeks and still feeling crazy. I haven’t slept right since I stopped. I also lost weight on this drug not gained. Bless you!
        • Darlene October 1, 2014, 4:15 pm
          Andrew, I hope you have gotten better. I am still trying to get back to normal if that is ever POSSIBLE. It has been 5 1/2 weeks since the last pill was taken. I wish I could find a doctor that believed Prednisone was the devil’s pill.
          • Andrew October 20, 2014, 3:29 am
            Darlene, How are you feeling now? I have been off for 5 1/2 weeks now and still not back to my self. I have spoke to many people who had the same reaction we did. They said it takes time but you will be back to normal. I mainly have anxiety/breathing issues and feel tense at times. Hope you feel better! Bless you!
          • Dee Sweet April 8, 2015, 4:36 pm
            Darlene and Andrew! Thank God for people willing to share how they feel with others! I have been off this EVIL pill for 4 weeks+ and still feel so horriible – though sometimes I feel not so bad than other days. My MD says I don’t know what I am talking about, but I will NEVER take this again – I don’t care what happens to me, nor will I ever allow anyone I love to take it. It is from the devil I am sure. I am praying all day, every day, that you guys feel better soon. Pray for me! I need every prayer I can get. xoxx God bless!!
  • Beverly Galante August 30, 2014, 9:26 pm
    I came of 1 year of high doses, finally quit cold turkey and almost died with pain. Went back to Rheumatologist and she put me on low doses for several months. I quit again recently but was back down to about 3mg. I have sore muscles, loose skin, my hands (of all things) are always in pain. I find it difficult to get in and out of cars, etc. I just wonder how long this will take to go away. And will it go away? I hate my loose skin also. Wondr how to deal with that. And everyone is right…..it is poison and I can’t wait for it to leave my body.
    • Sheila February 14, 2015, 11:53 pm
      To Beverly Galante, I am tapering after 2 years on prednisone. I have PMR. I had what I thought was severe sciatica but now realize that it was prednisone withdrawal. I have been on 5 mg for a long time. My neck hurts, it feels like someone is stabbing me in the hip, my shoulder, fingertips, lower legs and toes have pins and needles. I can barely take it anymore. I have to talk to my Dr. to help me get off of this poison. I hope I can make it through the pain.
      • Ltnash April 13, 2015, 12:15 pm
        Thanks to everyone who has commented. I have been on Prednisone since 2002, currently 2mgs a day. I have been trying to get off the drug for almost a year. (I had temporal arthritis and polymyalgia rheumatica). But my SED rates go to 30 or 40 and I experience many of the symptoms mentioned in the article and comments. I am really grateful because I will now power through them knowing I am not alone and what the symptoms of withdrawal can be!
      • Roy May 1, 2015, 4:55 am
        Sheila, hope your pain has lessened some by now. I too was on prednisone for almost 3 years for a chronic kidney disease. After adjusting to all the many side effects, I did obtain relief of my kidney problems. I then went on a scaled reduction from 80 mg down to 5 mg then stopping all together. I am now experiencing all the painful symptoms your described. The sharp pain in my hips is like being stabbed by a knife. I wake with stiff shoulders, knees, and hands. When I mentioned my hip pain to my MD, she only offered to order an x-ray. So glad to learn that my joint & muscle pain is due to prednisone “withdrawal”. Hope it goes away soon – it’s been rough for the last 3 months!
    • Donna May 1, 2015, 11:07 pm
      Beverly, I turn 35 this Aug and I have been on prednisone since diagnosed with Lupus and Reynaud’s. I couldn’t use my hands due to digital ulcers. As much as it has helped me when I was literally dying in pain, is as bad as it has destroyed my body. Got AVN and just had a hip replacement. I am now losing teeth partly from Lupus but the prednisone didn’t help.
      I have tried many times to get off with epic failures. After this past hip replacement I decided that’s enough. I am tapering very slow, currently on 2.5 now and man oh man I can barely get out of bed. All that keeps me going on with this taper is hope it will soon end. If I knew then… but I’m sure we all have said that. Also as a side note, I am a court reporter and also get major hand pain. I find what helps with the inflammation stiffness and pain is one of those foam stress balls.
      Not a hard one that you need to really struggle but just something that uses that movement. I actually use my soba Kawa pillow (not sure of the spelling). I do it every night and it helps so much. Even a regular pillow just something you can hold onto and squeeze. Weird but I find relief. -Donna
  • Jodi August 31, 2014, 2:31 pm
    My daughter, 13, was put on 50mgs of prednisone for just 5 days for a rash on her face…day 3 she started having anxiety attacks that would last for hours. We are now day 4 off the medicine and there is no end in sight. She is coming out of her skin with anxiety, racing thoughts, hysteria – crying, not feeling like herself and unable to cope. I asked her doctor about it and he said he’s never heard of anxiety with this med but ive found countless stories online of people feeling like they are losing their mind on less than 50mgs!! This cant last for months…she cant go to school, can barely make it through the day without me talking her down every second. I dont know what to do other than try to get her some xanax!
    • veronica October 18, 2014, 2:11 am
      Jodi, How long did this last? My daughter is 13 and on day 3 of panic attacks after taking the medicine for only 2 days. I feel horrible for her.
    • kaycee November 20, 2014, 4:40 am
      Hi Jodi – I recently was prescribed prednisone for inflammation and ringing in my ear. 50 mg for 5 days. By the third day I was ok the following morning I woke up with my heart rate increased walked my dog and nearly passed out. Went to the hospital was told to stop taking it. I went again to the ER 2 days later for palpitations. I remember taking 20 mg pred for 10 days and when I got off also had palpitations. I did not think anything of it at that time after many Dr visits even a heart monitor on me for 1 month! And to top it off, on the recent 3 days of 50 mg per day did not help with my ears.
  • H. L. King September 12, 2014, 3:22 pm
    I have had extreme headaches for nearly 10 years–called tension headaches and/or migraine. Every test and every med have been tried. the one thing that gave me any relief was a 6 day pack of Methylprednisolone or a cortisone shot in my aching neck. The pack did not last long but the shot gave relief when I was at the end of my rope. My doctor does not do the shots and does not px prednisone—he will allow the MP, but relief is short.
    One night I was next to insane with the head, and I had some 5mg left over from a previous Dr. who px prednisone freely. In desperation I took 5=25mg. at about 3a.m—-by 4a.m I had the most restful night I have had in 10 years followed by several days where I felt like living again, as I tapered down to 5 mg. daily. I believe I need a maintenance does like this and since I am 85 would be willing to take it for life for the relief. It returned some quality, appetite, zest for life, —I will ask the dr. to reconsider and give me a px for 5mg/daily.
  • Karen September 15, 2014, 11:55 pm
    My Dr. put me on 10mg of Prednisone for 7 days to help get rid of water and puffiness. Well, I have been off it for about 3 weeks and immediately following ending of the medication, I now have severe abdominal distention. I look like I’m about 6 months pregnant and none of my clothes fit. Wondering if anyone else had this reaction. I was diagnosed with Microscopic Colitis, but this doesn’t seem to go along with that. The Dr.’s don’t seem to know what’s going on, that’s why I thought it may be a reaction to the Prednisone.
    • Mike October 1, 2014, 6:06 pm
      Karen, how are you feeling now. I am experiencing your same symptoms
      • Colleen February 5, 2015, 3:02 pm
        I too have abdominal cramping! My life is on hold… I’m off it now and on Carafate for one month. Taken before meals and at bedtime. Does not work and I’m afraid to eat. The cramping is worse than Labor. Any suggestions that might help would be greatly appreciated.
    • Vicki Richardson March 1, 2015, 10:20 pm
      I’ve been of of this med for about 2 months and am laying on the couch typing this with an extended stomach. All I had to eat today were several pieces of toast this morning and my stomach gets huge. I’m going for a walk in awhile and am trying to take as many as I can. I’m hoping this helps flush it out and also give me my muscle tone back. Tired of this mess, and the doctors tell us NOTHING. Good and bad days with stomach, sometimes the less I eat the better.
  • MK September 19, 2014, 4:10 am
    My husband was on prednizone on and off for 2 months due to severe Asthma. He suffered many side effects including erectile dysfunction . Been off of it now 3 weeks, how long before he is feeling back to normal ?
  • JA September 20, 2014, 7:40 pm
    I was prescribed 10mg of Prednisone for 4 days with no taper. On day 5 I experienced a pretty significant panic attack which brought me back to the ER. They couldnt understand why the previous dr. did not taper my dosage so they prescribed a short tapered dose ranging from 3mg to 1mg over 6 days. It’s now day 3 after and I have still experienced withdrawal symptoms such as anxiety, clammy hands and feet, nervousness, and some low fever.
    I will recommend to everyone from my experience that you not have caffeine or stimulants while you are taking Prednisone, and that you should monitor your blood sugar after the prescription ends as your blood sugar will most likely drop. I found this out the hard way, and supplemented gatorade to increase my sugar and sodium levels and it has helped alot today. Doctors should give more verbal warnings and aftercare advice about this medication as it can be dangerous and take a while to get over.
    • cathy October 16, 2014, 1:01 pm
      My daughter just experienced the same thing. At college she got a severe ear infection. The dr. put her on a low dose for 5 days and then cold turkey. Three days later – she is a mess. She was never given any information and as she is 18, I was not included in the treatment plan.
  • SA September 21, 2014, 9:36 pm
    I was prescribed 50 mg of prednisone daily for 5 days followed by a 4 day taper (40, 30, 20, 10). By the day I tapered to 20, I woke up at 4 in the morning with one of the worst headaches of my life. It has been more than a week since the final dose. I have crying spells every day. I am so fatigued I can hardly function. I have taken naps which I never take. Yesterday, I slept for 11 hours and still could hardly drag myself out of bed. I have weird muscle cramps in my legs and abdomen that leave my muscles sore like I have bruises. All this and I only had five days of relief from the pain of cervical radiculopathy. How can I feel so terrible after only 10 days of this medication? And when will my body start making its own hormones again? I am so very exhausted and in more pain than when I started.
  • sandra September 27, 2014, 2:52 am
    (Finishing my comment)
    I feel that the doctor should express to their patient just how important it is to taper down. Like everyone here i am experiencing symptoms. One i havent read mentioned is the in ability to watch tv without becoming dizzy from the movements. Not as bad as some of you but im still hoping for no surprises. After dealing with this for about 3-4 months now, i feel im starting to settle down to normal. Pray for me.
    I pray all of you hang in there until your relief comes and that it comes real soon! The comforting part to me is that our bodies *can* recover. I was wondering about diet and vitamins and anything we can do to help our adreanal glands along.
    Take care and God speed for a quick recovery for everyone here.
    Sandra
    • Amber February 22, 2015, 2:28 am
      My doctors idea of tapering down has left me unable to function without taking pain medication. I was on 60mg of predisone for the past 6 weeks. I have Steven Johnson’s Syndrome, which is an allergic reaction to antibiotics, and prednisone does help with that, as far as I know it is what saved my life this time. My doctor prescribed 60mg of prednisone and also some Hydrocodone pain pills, I still had a few of the pain pills left and hope he will give me a refill on them.
      He cut me from the 60mg of predisone to 10mg of prednisone, just like that. I have such severe pain that I can’t even walk. I asked him if he thought it was the lack of prednisone and he told me no, but I know different. So here I am in so much pain that all I can do is cry and scream and can’t even get out of bed without a pain pill anymore. I only have 2 pain pills left. I tried OTC but they don’t even touch the pain.
      I don’t know what to do, but I am at least glad to know that there are others like me and that what I am experiencing is real. Everything hurts and it feels like I have waves of pain wash over my body. I hope that no one has to go through the pain I am in, or that they have a doctor who cuts them 50mg all at once. I don’t hate prednisone, as it is what I truly believe saved my life, but I do hate the fact that I am now in so much pain because of it. Hope you all feel better quickly. -Amber
      • terri hale March 26, 2015, 10:10 am
        I have polymyalgia. I become ill with it at the end of 2013 after the shock of finding my partners mum had died before we managed to get to her. Couldn’t get over the Dartford Bridge so much traffic. The pain was so severe in my muscles that over that Christmas it was a nightmare. When I was able to see my doctor he put me on 20mg prednisolone for 4 weeks to try and taper down. I am now down to 5mg tried 4mg but pain came back so up 1mg again. To be honest I’m not me anymore. I have days when my head is so far in the clouds that I can’t drive or do anything sensible. I have prior to this never been ill, odd flu and sore throats but never anything serious.
        I can’t take medication of any kind normally it has a very bad effect on my body making me more ill. So at 77 years old what do I do. I have always been small and full of energy so to have gained 2 1/2 stone in this past year is unbelievable. My stomach is huge, I now have a hiatus hernia which the steroids are making far worse. I hope to be off them come this summer but I know what the pain will be like and am very worried that I won’t be able to cope. I hope all of you out there manage to get your dosage down and feel better.
    • Rose April 10, 2015, 6:35 pm
      Hi Sandra. It has been 7 months since your comments and I hope by now you are back to your normal self. I have been on high doses of prednisone for PMR and GCA for 4 months. When I saw what this drug was doing to my health I immediately began the tapering process. I have now reduced my dosage from 50 mg daily to 17mg. I am experiencing some side effects and withdrawal symptoms, which mimic the illness I was being treated for. I have found that mega doses of vitamins have helped to minimize those symptoms.
      I am taking evening primrose oil, zinc, and lecithin to help the hormone levels reach normal production as well as Vitamin C, Vit. A&D., Calcium, magnesium, Vit. E, and all the B vitamins. I am taking so many vitamins as well as still being on prednisone, I actually have made up a daily chart to help me track my vitamin and drug plan. I have found the vitamins very beneficial (especially the hormonal ones) and am hoping my symptoms do not worsen. I hope this is helpful to every one else trying to quit this “evil drug.”
  • Mara September 30, 2014, 10:24 pm
    I was on Prednisone for about 3 months starting at 60mg and tapering off in the last 4 weeks that I was on the medication. I almost immediately was hit by joint pain and increased diabetic neuropathy in my feet. I am not about 3 months off the steroids and it has been a definite battle. I am feeling a little better. Joint pain is still there but getting better.
    I had hives for a short while, but that seems to have cleared up. I am also having trouble with blurry vision, although I just had an eye exam and there are no problems. While this is a tough road to hoe, I think keeping as positive and attitude as you can is essential. It’s difficult when you are in serious pain and can’t sleep, but it does get better. I think the hardest part is that doctors don’t really talk about the side effects or listen to you when you are complaining about issues from withdrawal. In fact, I think that they may not even be aware half the time.
    My endocrinologist looked at me like elephants were coming out of my mouth when I told him I thought I was having issues with my feet because of this. Bottom line – go to a doctor who will listen. I finally got a doctor who knew something about it, and it turned out to be my podiatrist. He prescribed Lyrica for my feet and it has taken my pain from a 10 to a 4 or 5. Hang in there. I am and I’m confident that I’ll feel better within the year.
    • Beck December 19, 2014, 10:38 pm
      I was on pred for 2.5 years. From 5mg to 60mg for lupus face rash. No Dr ever told me about the side effects of being on it (heart palpitations, anxiety, short term memory problems, eyesight issues, sleep deprivation, depression a terribly boated face and more). No Dr again (!), and I have several Dr’s, told me about the impacts of withdrawal! I tapered over MONTHS by 10mg then by 5 mg, 2.5 mg and by 1mg. So careful! But still, as soon as I hit 3mg, the withdrawal side effects started. Now it is 5 months on and I’m still having them!
      It’s doing my head in! The anxiety and head mess up has finally dissipated but I am still plagued with fatigue, aches, bloated joints, particularly in the mornings, itchy skin (no rash though) (particularly after showering). The brochure talked about 5% experiencing depression on the drug, well I know others who’ve taken it and read a lot of online comments. It seems almost all people feel emotional impacts when on it from garden variety anxiety to depression and suicidal thoughts.
      But there was nothing in the brochure about side effects coming off it other than be careful to taper so your body can learn to self produce the stuff again. OMG, 5 months of hell coming off the drug (still ongoing) and that’s after 2 years of hell, all for a subacute curtaneous lupus rash. I tried to come off several times during the 2.5 years but each time got lupus skin flairs. In the end, I was paranoid of lupus flairs and tapered over 5 months.
      Suffice to say, tapering more carefully than I have read anyone else has did not, is not, has not helped to save me from the hellish joint pain, fatigue, depression, inflammation and itches that are ongoing now as I head towards month 6. If you’re not on pred, don’t take it unless it’s saving your life. Hives, rashes etc, not worth it! If you are on it, give your Dr a serve if they didn’t go through all the symptoms and withdrawal risks before prescribing it. Give them another serve if they didn’t explore all alternatives before prescribing pred. It’s a terrible medication. Terrible.
      • Lisa Sellers January 10, 2015, 1:44 am
        I finished very slow taper (stepping down 2.5 MG every two weeks starting at 20 mg) after 4 years of the stuff. It has been roughly two weeks. I continue to feel weaker and more horrific each day. How are you doing, Beck?
  • Darlene October 1, 2014, 3:34 pm
    Here is another follow up from my previous posts. It is now week 5 1/2 and I am still running a low grade fever. Had so many blood tests ran. I even went to another doctor who was great but thinks that because the Prednisone was within a 2 week time frame that all should be gone. I am STILL not right. No one can find the cause of the low grade fever. Still losing weight. Before I had a hard time losing weight. I developed some weird white stuff(not candida) in my mouth and went to the doctor and dentist. The dentist said it was due to the Prednisone.
    It has been 5 weeks! Why is this crap still going on??? My stomach did calm down from the beginning but just had an abdominal ultrasound done to check things in there. I still really have no appetite and as I mentioned before I way less now than when I did this crap. When it began I had an 80Mg shot of Depo Medrol for the poison ivy/Oak then a 5 day taper that I stopped after 7 pills. Then went back to my primary since the first stuff was from Urgent Care and they put me on the 12 day that I stopped at 8 days due to problems.
    They say it should be out of my system but I don’t believe it. I really feel that I am messed up from this garbage . No one can provide any definitive answers. I keep hearing if it was two weeks you should be fine. Even the Urgent Care doc doesn’t believe Pred does this. Really??? Because i have a mountain of doctor bills to prove otherwise and this crap should not be administered for something like poison ivy.I had never taken this garbage before . I feel hopeless.
    Yes I have asked about Adrenal Insufficiency asking if this is my problem and they are like ,no we don’t think so. I just want to be normal again is all.I am scared it isn’t going to happen. My immune system is jacked up now. Can anyone out there that has went through this provide some positive feedback? Please don’t say I will have to go back on the devil pills in hopes of correcting my body. This should not be happening still.
    • carrie January 14, 2015, 2:49 am
      Darlene, how are you feeling lately? I’m now at 6 weeks and am still having major issues! Anxiety, insomnia, and just feeling overall terrible! Hope you’re doing better!
  • Craig October 8, 2014, 5:38 am
    Came off a 3 months 5mg dose no taper and I was prescribed for carpel tunnel then gout. I have the worst anxiety of my life racing thoughts think the worst of everyone shaky hands I will never take prednisone again its been two week still no improvement. I hope to see a end to this soon. No one believes me when I tell them it was from the predisone.
  • V. Thompson October 9, 2014, 3:53 am
    I have been taking prednisone for nearly 22yrs, ppl say they never heard of such a thing.. Yes I was.. Went to new endocrinologist and he took me off.. I was taking 5mg daily.. For adrenal insufficiency or addisons.. Guess what? He said I did’nt have either one. So yes, I was taking this stuff all these years for nothing.. Now I feel like a tin man.. I hurt like hell all over.. From head to feet.. and now it maybe years b4 I can get some relief. If anyone has any suggestions please let me know..
    • Anita October 14, 2014, 12:19 am
      I can’t believe that a doctor would keep you on prednisone for so many years, that’s outrageous!! I know exactly how you feel when you mentioned “tin man.”
      I was on prednisone for 1 year as a result from a severe allergic reaction to an antibiotic which gave me PMR. I am going through the process now of eliminating this drug from my body. I can relate to what everyone is going through.
      I decided to visit a Chinese herbalist, who put me on a course of ginseng tablets and herbs which I have to boil and drink twice a day for 2 weeks. I have also been having acupuncture, I don’t like needles so I have the machine, they put pebbles on a strap then put the strap around your sore points, which in my case are my knees. Then they have wires that connect to a machine which feels like little pin pricks, doesn’t hurt.
      I have had 5 treatments so far and I definitely feel improvement. I also bought some ointment that they use called Wong To Yick which I usually use on my joints 3-5 times a day depending on my stiffness. The hardest thing for me is getting in and out of the car and bending to pick something off the floor.
      I try and do a little exercise every day like walking stretching nothing too strenuous and nap when I feel tired.
      The most important advice I can offer is listen to your body for only you know what your body is capable of. I hope this gives you some hope that their are other options out there that can help. Good luck and I will keep you informed about my journey to recovery. Keep positive.
    • connie December 19, 2014, 9:31 pm
      I have been on Prednisone for years also. Past 2 years been on 5mg daily. I have lung issues… Anyways, I have recently stopped my prednisone and feel like I have been hit with a mac truck. I bent down to pick something off the floor and soreness in my muscles had me in tears. My stomach is swollen and hurting. This is all scaring me. I have read all of these comments and it’s making me wish I had not stopped them!
      • terri December 30, 2014, 1:04 am
        OK now I am scared I have been on Medrol (Predisone) for oh my god! Since I was 28! I am now 51! I have severe asthma and this is the only thing that works 8mg a day… my skin is thin, I bruise all the time, I look like a walking pin cushion 🙁 from my doggie. Just saying hello I don’t think I will ever be able to get off this stuff. If I miss a dose my nose clogs up and wheezing and coughing starts right away as a reminder to take it. I screwed up taking it for so long 🙁 I Pray you all get off this before it is too late to even try 🙁
  • Lyn October 14, 2014, 11:09 pm
    Hi. I just finished reading all the comments on this page… some have been helpful… others, outright scary. My mother (50 years) has been on prednisone for 3 years taking 80mg. This year, she started weaning the meds until last month when she decided she was tired and stopped taking the then 30mg entirely.
    For about a week now, she started facing serious joint pains and has been bedridden the whole day today. My mom is a very strong woman, and it breaks my heart to see her like this.
    Can anyone tell me how she can help ease the symptoms and how soon the pain will go away for good? And also if the pain can get worse or life threatening. My mother is all I have and she means the entire universe to me. Kindly give any helpful advice you have no matter how little it is. We live in Ghana, west africa and most pharmacists and doctors we have been to know nothing about what she is going through. Some say it’s just menopause or old age. The internet is my last resort, and it has been the most helpful so far. Advice, support and feedback are more than welcomed. God bless.
    • Anita October 16, 2014, 1:50 pm
      Lyn I was just reading your comment and had to respond. Your mum really needs to go back to her doctor and go on a plan of weaning off prednisone the right way. This drug should not be stopped cold turkey as it could do more harm. I used to have a blood test every 6 weeks to check my inflammation level, ask her doctor to do a blood test to check this. There is so much information on the Internet which explains the working of this drug on the body, it helped me to understand what was happening.
      I have never experienced so much pain in my life and just to make life more interesting I tripped over and broke my rib. My reason for wanting to get off this drug was the horrific side effects and it took me 6 months of nagging my doctor before he started to wean me off. From my experience to make your mum more comfortable, there are many arthritic linoments out there that would help to ease the pain of her joints, drink plenty of water which lubricates the joints, I also used to have a glass of warm water with lemon in the mornings to try and make my body more alkaline.
      Pillows under legs when sleeping, hot water bottle also helps. Whole foods, fruits and veggies are good. When I was in severe pain and couldn’t get comfortable to sleep but felt exhausted from the pain I would listen to meditation tapes on Youtube by Louise Hay, this also helped. Because your mum has been on a high dosage she has to be weaned off slowly so her body can adjust, other wise your body can go into shock. It’s been 6 weeks now since I have been off prednisone, the first 3 weeks were the worse but I have been having acupuncture and I am starting to feel human again. I hope this helps you. Take care.
      • Lyn December 4, 2014, 2:27 pm
        Thank you for your help Anita. My mum is getting better and she is following your advice. I appreciate that you responded, you have been so helpful. I wish you a full recovery in the shortest possible time. Thank you very much. Take care… ^_^
  • Ken October 15, 2014, 1:08 pm
    I’ve recently experienced a series of adverse events while taking Prednisone for poison ivy and it’s very serious. I suddenly got very argumentative with my girlfriend on the day I completed the dose (I was tapering down but for whatever reason, I had 3 10mg pills left and took them remembering the doctor encouraged me to complete the dose.) That evening we went to the park for a jog, so I took two Aleve and some 5 hour energy.
    The short story is she hasn’t talked to me since and she has moved out of the house and says she’ll never talk to me again. She dismisses that my extreme argumentativeness was due to the Prednisone. I don’t blame her for being hurt by my words and feeling frightened by my aggressiveness. It took me a couple of days to recognize that it was the Prednisone that was driving me to try and win arguments over two subjects that have challenged us in the past.
    Uninhibited, I felt that I could convince her to see things my way. All I did was scare the hell out of her. Losing her has made the withdrawals even worse, I’m a basket case and went to see a psychologist for anger management. It can be extremely destructive to those who are sensitive to the side effects in this drug. Heads up, avoid potential heartbreak, ask someone to keep an eye on you when you’re medicating. Avoid interactions with naxporen and alcohol! Please be careful out there!
    • Richard March 26, 2015, 10:58 am
      Hi Ken, wow that story matches mine with the arguments. I wasn’t on a high dose 10mgs for about 8 months weening of now. My wife walked out on me at Christmas due to me wanting answers to our situation (like a dog with a bone). 2 weeks ago I had the biggest headache in the world I thought it was all over I was literally sick which I never am even when drunk or in a hangover and crashed out for 2 whole days and the rest of the next week felt like crap. I have the shakes like mad too. I’m now down to 1.5mgs and don’t feel well but if it stays at this level I can cope. At the moment my message is do it slowly lets see what the next month brings when we come off completely. Good luck to you all stay strong and focused. -Richard
  • Sonia October 15, 2014, 6:43 pm
    I was given prednisone for a skin reaction to cosmetics that wouldn’t subside by an urgent care facility. It was supposed to be 40mg for 7 days–I started on a Sunday and by Tuesday I felt like my heart was going to pound out of my chest. I woke up to a pounding heart at night. So I was told to take 20 in the AM and 20 in the pm and if I still feel funny go down to 20 a day then 10. I did exactly that. Monday was my last dose of 10 – I threw the last few away.
    I have had the worst heartburn/pain ever. It goes away with antacids to return again. Then I had pretty severe muscle pain of my back which was gone in 24 hours. I have tried everything for the heartburn – today the it subsided for almost 3 hours and in that time my skin is hot and itchy. I am seeing my Dr. tomorrow. Feel dizzy, anxious, panicky, my sinuses are shifting so much I have a headache and I am hungry but afraid to mess up my stomach even more.
    Symptom after symptom and I stopped two days ago. I am so uncomfortable and the anxiety (another thing) keeps telling me I’m having a heart attack. I thought this was a good drug for the allergic reaction – that it would ‘kick’ it. But now I am riddled with a ton of new symptoms. Hope this all goes away. I’ll deal with the allergies with Benadryl or something!
  • Claire October 20, 2014, 4:52 am
    I am currently on 80mg a day for almost two months. I was diagnosed with IGA Nephropathy which is a Autoimmune Deficiency and they said this is the first choice of treatment and the less aggressive. The next step if this does not provide my body with remission is a chemotherapy regimen. I have to say I feel like my body is going through Hell daily. First six weeks or so I had awful mouth sores, constant metallic taste in my mouth, facial and neck swelling, no more than 2-3 hours of sleep per night, and my mind wandering constantly.
    The last two weeks we can add to the list so much facial swelling my head hurts, eyes swollen,distorted vision, abdominal bleeding ( doctors believe a ulcer) I am feeling fatigued, ringing in the ears and unbelievably thirsty all the time. The really frustrating part is that I sit here wondering if this is worth it. I have a appointment with my doctor in 3 days where I find out if this Hellish experience is worth it…if so I get to look forward to these awful withdrawal stories and if not…I get to look forward to the withdrawal symptoms while undergoing chemotherapy.
    I really wish there were other/better treatment options but it appears from my reading and speaking with people there really isn’t. Every time I feel like why am I doing this. I look at my three daughters: 22,18,16 and remember that I cannot give up. It’s a pretty awful existence right now, but I trust that my doctor is doing what’s best for me. He was honest about the side effects and has called me numerous times asking if the quality of life is compromised to a point where I want to try the next step. I figure give this a two month course as originally suggested.
    Plenty of time to explore the chemotherapy side effect boards if it comes to that. I feel for all of you who feel the treatment you were given hindered you more than it helped you. I certainly hope my experience is not the same, if this is the worst I will keep pushing on.
  • Kristi October 21, 2014, 12:24 am
    I started on 60 mgs of prednisone for a very rare auto immune disease that affected all of my connective tissues. I started tapering almost immediately but 6 mos after starting we discovered that my disease had also attacked my heart, causing scarring which attracted clots. My doctors believed the prednisone stopped the heart disease in its tracks … It probably would have killed me if I hadn’t started the prednisone when I did.
    So in an abundance of caution, I went on an extremely slow taper. At one point I experienced adrenal fatigue and had to go back up on my dose. It took 2 1/2 years but I finally got off in July. I experienced every bad side effect you can imagine… I gained 60 lbs, had the moon face and “buffalo hump,” acne, facial hair … It was a nightmare. By the time I got down to 5 mgs all the negative side effects went away and my weight started to come off in its own. I decided to put some effort I to it and really started focusing on diet and exercise and ended up losing almost all of my added weight.
    I was riding my bike up to 10 miles a day and going to the gym doing cardio and weights. By Sept my daily schedule made it difficult to exercise at the same level and frequency as I was before. I started to notice that when I did exercise I would get aches and pains that I wasn’t experiencing before. Biking caused severe pain in my ankle forcing me to give it a rest. Then I started experiencing horrible pain in my hips and I noticed I’m unusually tired all the time. I get depressed and anxious.
    I told my friends I thought it was a mid life crisis (tomorrow’s my 41st birthday), but when I mentioned it to my rheumatologist last week she said it could be lingering withdrawal from prednisone. I told her I just thought I needed to get back to the gym and maybe I’d feel better but it’s gotten so much worse just in the past week. I definitely feel like I did when I had adrenal fatigue before. I don’t understand it because it just hit me and I’ve been off prednisone for 3 months.
    I was completely fine for at least 2 months after I stopped it. I’m wondering if it has something to do with the fact that I was exercising so much when I went off and now that I’ve basically stopped I’m hit with adrenal fatigue. It’s a catch 22 though… I’m way to tired and achy to want to work out but I do wonder if it would help.
  • Susan October 22, 2014, 11:02 pm
    I was given a shot of steroid and then a 6 day dose that tapered down for sinusitis/ bronchitis and I was so dizzy as I started to taper down that I stopped a day early. Now I’m experiencing anxiety and shakes. I’m scared to leave the house because I’m afraid I’ll have an attack away from home. It’s been 5 days and thought I was doing better but ended up having another attack with terrible shaking. Am I ever going to get over this. I’m to the point I just want to cry when it starts happening.
    Hoping to see the doctor tomorrow but it sounds like it just has to run its course. Not sure how much more I can take. All I can say is never again anyone will get me to take prednisone. Xanax seem to help but really don’t like to take them. I’m going to try vit C and more sugar/ sodium that some in this blog suggested. I’ll keep you posted it it works. God bless all that are suffering through this. Hope relief is soon.
  • Dot October 23, 2014, 4:10 pm
    I was put on 60mg of prednisone for one week and then 50mg for one month, 40mg for one month, 30mg for one month, 20mg for one month, 10mg for one month, and then 9mg for one week, on down to one. I think my pulmonologist was right about the weaning process. I was on it for around 4 1/2 months. My Boop pneumonia has gone, but I’ve educated myself and found that the Macrolide antibiotics have anti-inflammatory properties, and have shown promise. Will take longer on antibiotics, but you don’t have all the hellish side effects.
    I was in pure misery. The doctor did not even know about this. I did my homework and found out about this great antibiotic!!! If I ever get this hellish disease again, I’m going with the Erythromycin and other Macrolide antibiotics. Might take longer than prednisone, but this prednisone is a killer. I am achy, can’t exercise, still tired, irritable, depressed and I’ve been off this crap for over 2 months. I will never take this drug again. It is hell!
    • Debra October 30, 2014, 1:02 am
      I have the same thing. But on the 3 months scan his wasn’t completely gone. It grew so rapidly the first 3 months that they thought it was cancer. Biopsy showed it was boop. Have five weeks left on steroids. Hope it’s gone on next scan. I feel terrible 6 months on prednisone
      • Joan December 8, 2014, 11:56 pm
        Hope things are getting better for you. I too had BOOP type pneumonia and have been on prednisone since last April. Had the pneumonia go from one lung to both on the second scan. 3rd scan showed almost clear and now am on taper off prednisone. Down to 30 mg currently. My back is very painful and I am thinking it is from the prednisone withdrawal. Can’t wait to get off of all these medications. Was your book a result of radiation?
        • Leslie February 6, 2015, 2:07 am
          I was diagnosed with BOOP last year after a lung biopsy. I was asked to take 60mg of predinsone but I took only 10mg. I didn’t get the weight gain but I didn’t get any better. Since then, I have listened to the Dr and have been on predinsone on and off (weened each time) and both of my lungs are still congested. I just want to get well. I am currently aching from withdrawals because I have been off for 4 months. Riding a stationary bike slowly makes my joints feel better and using light weights. I just want to breathe normal again….
  • phil October 25, 2014, 2:14 pm
    Wow, I must be really lucky. I was on 10 mgs of prednisone 3 months then tapered down to 5 mg for 2 months due to rheumatoid arthritis and haven’t had a fraction of the negative effects people have listed here. This drug was a godsend for me and kept me from quitting my job due to constant joint pain. I did have trouble sleeping while I was on it but this was minimized when I started taking it first thing in the morning.
    To the people that say doctors are stupid for prescribing this, I doubt you’ve had an autoimmune disease. For myself and a lot of other people this drug kept me from being in a wheelchair at age 23. Yes the side effects can be life altering but for people who truly need it they are well worth it. At the same time, it does appear that some doctors give this stuff out at high doses for conditions that probably don’t call for it, such as poison ivy.
    • Lisa November 28, 2014, 11:06 am
      Thankyou for your post. I too have had great relief from prednisone for asthma (life saving), severe allergies to antibiotics, and more recently severe and debilitating onset of an auto-immune disease. I was gtting a bit annoyed by all the ‘poison drug’ posts. Most of the major issues seems to be from not tapering as per doctors instructions. Or not consulting their doctor for a longer/shorter taper period when it wasnt going well. I have had to up the dose during the taper period as my body wasnt adjusting quick enough or had a ‘flare up’ but ALWAYS with discussion with my doctor or rheumatologist first.
  • Darlene October 27, 2014, 7:36 pm
    Well it has been 26 days since my last post and here is where I am at. I stopped the pred pills on 8-23 as you can see in my above posts. I was given a Depo-Medrol 80Mg shot on 8-3-14 at the beginning of this mess. I am still trying to pull through this. My stomach has gotten better but I am going to see a gastro doc tomorrow. It takes forever to get into them. I am on a 2nd round of antibiotics for a cough and sore throat that started just a few eeks after stopping pred. My vitamin levels are normal and my last CBC was on 9-25-14.
    I gyno referred me to one of the top endocrinologist doctors in Cincinnati. I have headaches that come and go and baseline cortisol and ACTH taken early in the morning showed normal. This isn’t your ACTH stim test but some normalcy is better than none. I still DO NOT feel normal. I have learned so much from my experience. My family doctor seems to believe me now after blowing me off for weeks and several appointments after seeing that I haven’t been well. I was on prednisone and the shot for no more than two weeks adding it all up. I feel like it totally changed me.
    I still have anxiety and the shakes. If you are a long time user DO NOT just stop taking this. You must wean off. Talk to your doctor about weaning if you want off of it. I will never willingly take this stuff again. I feel sorry for people who have been on it for a long time. Anything over 2 weeks starts long term. The doctors do not tell you what this does to your body as they are unsure. I would also think twice about getting that allergy shot. I had no idea I was actually given a steroid shot for poison ivy. These can take months to leave the body contrary to what any doctor says.
    My doctor was honest ad said it can take months. Prednisone is evil but at least you can stop the pills and not have to worry about it lingering forever. Prednisone does stay in your tissues until it all comes out. I lost a lot of weight when I stopped and really gained only like 3 lbs. I still have a daily occurrence of the low grade fever that goes up and down and no explanation. I think my body may one day recover but it will be a while. I pray we all feel better soon. If you are given this medication please research before you take it.
    It also can cause psychosis. I will try and update as time goes on and let you know what happens. I hope it hasn’t damaged me too bad. I didn’t realize that you can also get cancer from it lowering your immune system and if you had any hidden infection you are screwed. Good Luck everyone.
  • ulcerative colitis girl October 28, 2014, 3:17 am
    This is the worst drug I’ve ever taken. This is the second course for me and I’ve experienced severe withdrawal symptoms this round. The first round was fine. But this taper is crippling to say the least. Can’t get out of bed. My husband has to carry me to bed at times. Can’t walk. Everything that I eat pains my stomach and makes the withdrawal symptoms 10x worse so you resort to not wanting to eat because food becomes your worse enemy. The worst symptom that I experienced is severe severe abdominal pain — as mentioned above — to the point where I couldn’t stand up.
    I would crawl to get my pills and food to eat in the morning just so I didn’t die from not taking them at all. Another severe symptom that I experienced was vomiting everyday. Nothing stayed down. My doctor finally prescribed a medication that would coat my stomach in the morning before taking it. I haven’t started it yet — tomorrow thankfully! But I am looking forward to continuing to heal and finally end this prednisone hell. My advice to anyone out there — if you don’t NEED to be on prednisone, and I mean need as in no not a flareup that you need to get under control but NEED as in if you don’t take it you’re going to die — then I would stay very very far away.
    I have only been on it for less than one month and started tapering after week 2.5. Also be very skeptical of doctors who “freely” prescribe prednisone like its a benign medication sort of like a tylenol. This is a very deadly drug. My doctor (former now BC I got a new one) prescribed 60mg, then increased the dose to 80mg and when I told him I started to feel sick on 80mg, he tapered me off too fast. That’s when my body almost crippled. I am 125 pounds and my new doctor advised there is no way someone my size should be on 80mg even at my worse flareup (ulcerative colitis). Good luck. Please stay away from this drug.
    • Darlene October 30, 2014, 3:04 pm
      @ UC girl: I am so sorry that you are also having so many problems. The prednisone actually has caused digestive distress fro me among all of the other problems. I had never used this drug before and I hope to never have to take it again. Doctors are uneducated about this medicine and even short term has caused me problems that I cannot overcome. I hope you feel better and you were put on a high dose. I started out at 40Mg a day for five days (only took 7 out of ten pills) and then on the 2nd round it was for 12 days (only took for 8 1/2 and took 24 out of 30 pills).
      I started getting mouth sores and white gums while on it and my bp and blood sugar went up. Three days after stopping all hell broke loose. I have never been the same and that was almost 9 weeks ago . My doctor thinks I am crazy a bit still and I am sick of going to them to get answers. My blood work was off the charts a week after stopping but has since returned to “normal”. I can’t seem to get back . Some people have no problems on this stuff while others do. How long have you had UC? What are your symptoms? I think it is funny that they are using this drug to help your UC and it caused me a possible ulcer and prednisone induced gastritis that has occurred. Hope you feel better soon.
  • Kayla October 30, 2014, 9:32 pm
    I am 19 years old and have had Crohn’s disease for about 6 years. I have been on prednisone at least once a year every year since I was diagnosed and it is always hell. Recently, I had a pretty severe bout and the doctor started me at 40 mg a day tapering off at 10 a week. I immediately received the all too familiar symptoms including the anxiety attacks and severe hunger. I called my mom last week in tears, telling her I was too stupid for college because I had a C in a class.
    I have had the weight gain, the moon face, the insomnia, the acne, and many other symptoms from the prednisone. I wish I could say it gets better right away, but it’s definitely a patience thing. Sometimes when I’m on it, I will barely have any symptoms and will feel like myself again in a week. Other times, it can take up to 2 months to be back to myself. All I can say is hang in there, you will make it through this.
  • lori October 30, 2014, 10:48 pm
    I have been on 10 mil for 2 years. I had a dr apt which they asked me to bring all my medications to the apt with to go over everything and note what I’m taking I have memory problems but anyways I got home and forgot to put my medications back so I took them like I’m supposed to everyday and I when without prednisone for 5 days cold turkey I was shaking nauseous and dizzy and my stomach hurt I thought I had the flu until I realized wait I haven’t been taking my medication. I went and took my 10 mil prednisone and felt better with in 30 min. It took me probably 3 days before the withdrawals got bad but I thought I had the flu. Just thought I’d share of how bad it was in only 5 days for me cold turkey. I’m on prednisone until my dr says different he says because of my illness.
  • April October 31, 2014, 1:45 am
    Prednisone saved me! The side effects were not fun, but I developed shingles on my 7th and 8th nerve. This condition is called Ramsay’s Hunt syndrome. I had to do 2 rounds of depo medrol shots and 30 mg a day both times. Then tapered off. My paralysis is gone and the vertigo has pretty much cleared up. My condition lasted 3 months. The side effects were unpleasant.
    Bad headaches, insomnia, stomach cramps and weight gain. Both times I finished the 12 day tapering off I slept 12 hours at night and found myself nodding off during the day. For the last 3 months I have either not been sleeping or wanting to sleep constantly. Without the prednisone I may have experienced permanent damage to my facial and vestibular nerves. Despite the side effects I would take it again under these circumstances.
  • Jessica November 4, 2014, 8:27 am
    I was on a 5 day course of 20mg day, or short burst with no taper, for acute bronchitis. I was told by my doctor there should be minimal side effects since it was only a short course. After my last dose I immediately experienced extreme fatigue and nausea and had to eat every two hours to keep my energy levels up despite having a decrease in appetite. Now 3 weeks later I am still experiencing some muscle aches, increased anxiety, irregular menstruation, and insomnia. Hope these withdrawal symptoms go away soon!
  • Bette November 7, 2014, 3:37 pm
    In January this year I was diagnosed with Polymyalgia/Rheumatica and was put on 10mg of Prednisone and told to reduce it to 5mg in 2 weeks and see my GP after that. Nothing helped my excruciating pain, so I searched for another Rheumatologist and he said I should have been on 20mg and reduce over 6 months or more. I have been doing that and am now down to 4 1/2mg. I have been very depressed and extremely tired this last month or so.
    I can relate to the person who lost their girlfriend over an argument, my husband is one of the most patient people I know, bless him. He has put up with my horrible mood swings and nasty remarks, I am hoping this will subside soon and we can get back to normal. I have read that it takes a long time for the adrenal glands to start producing on their own again, so am hoping when I see the Dr. again he will tell me I can get off this steroid forever. Hope everyone gets better soon.
    I also wanted to know if anyone has experienced numb legs and feet from the knee down? I’ve never been told by any Dr. that this could be one of the side effects from withdrawal or they just don’t know!
  • jackke millman November 8, 2014, 4:18 pm
    Me too. My ENT consultant put me on an intensive medical management for Chronic sinusitis. 5 days of 40mg no taper, 100mg doxycycline, 10 mg montelukast, an antihistamine and steroid nose drops twice a day. I have never ever felt so ill. Coming off the steroid I went into severe anxiety with racing heart 155 beats per min, severe muscle pain and I couldn’t get out of bed for 5 days. Went to GP twice and he took me off everything. Feel a bit better a week later but now have cold sores and dry mouth. Never ever ever will I take prednisone again. With all that poly-pharmacy how on earth will the docs know which drug is causing what side effect.
  • Connie November 12, 2014, 1:49 am
    I was adamant about not taking Prednisone, but there I was, just diagnosed with Lupus @ 77, rash and itches over my entire body, but subsiding. Reluctantly filled script for Prednisone 5 mg 2x day,even though he said 1x a day. Took it for 2 weeks. Suffered severe abdominal pain. Just finished P.T. for a fractured sacrum and compressed lumbar vertebrae, leaking and encroaching my spine.
    I made amazing progress, then decided to quit the Prednisone (just 5 mg). Hypoglycemia returned, after absence of many years, severe lower back pain, thoracic and neck pain. Waking in the a.m. with severe L neck and head pain which left me 3 years ago after a cervical discectomy, replaced with titanium basket. My surgeon was my hero. But withdrawal from Prednisone changed all that. I pray this will not last long. Still walking Andy, our beautiful Greyhound. He just got certified as a Therapy Dog.
  • Craig November 13, 2014, 2:44 am
    Hi guys, when you wean down and get down to about 10mg it gets tough. Around this stage you might need to come down 2.5mg a week but I had bad problems and so my endocrinologist said try 1mg a week. I’ve been doing this but bought some 1mg tablets and cut in half. I do 3 days at say 9.5 then 3-4 days at 9mg etc and continually wean down. I also use lavender essential oils to help with sleep and chamomile tea to help with anxiety and occasionally 1/4 of a valium if it’s really bad. Currently on 6.5 mg and seeing Endocrinologist next week when I reach 5mg to have a blood test for ACTH to see if my body is producing cortisol on it’s own. It’s important to have this monitored if you have been on a high dose/been on for an extended period. Good luck everybody!
  • moiraann November 13, 2014, 5:41 am
    I was in prednisone for four years for Polymialgia Rheumatica. I have been off the drugs for eight weeks. I put on a huge amount of weight which I am finding impossible to shift. I am still experiencing a lot of pain but fatigue is getting less and I am finally able to do a little bit of walking again. I’m hoping my symptoms will go away soon. I’m determined not to go back on prednisone because it messes with your head and body.
  • Lynette November 13, 2014, 10:23 pm
    I was on 60mg tapering down to 20. Couldn’t stand it. Weight gain, puffiness in face, acne, unable to sleep, got everything you could think of. I became extremely argumentative. Anyway long story short my husband couldn’t stand being around me, he wasn’t supportive, caring, or compassionate. We are in the process of divorcing. I am off prednisone but still have the shakes. When will they end?
  • Amy November 19, 2014, 12:37 am
    My daughter was 14 months when she had her first asthma episode. Then for months, a year afterwards I had her on prednisone via nebulizer every winter season – until I figured out how to get her off the drugs (changed her diet a million times until I got it right, took me over a year). Now almost 10, she is the same height as her 7-year-old brother. My husband and I are over 5’8″ tall.
    Prednisone not only depresses the immune system, it stunts growth. My daughter caught every speck of a germ that anyone and everyone was carrying, which severely limited her play-dates and she had cavities galore from the nebulizer/inhaler use. I fear that the effects are permanent.
  • Dee November 19, 2014, 4:30 am
    I just read through all of these comments, searching for a little ray of hope for my Mom’s symptoms. She was put on 40mg/day (20 in the morning, 20 in the evening), for one month. 3 weeks into it, she went down to 20/day because it was making her feel like she was losing her mind. After a week of being on 20, get Dr told her drop to 10mg for 3 days, then 5mg for 3 days, and then she’d be off of them.
    This past Saturday (Nov 15th) was the last day she took it. Today is the 18th, only 3 days of being off of it, she was in bed almost all day. She’s been experiencing terrible nausea, upper & lower back pain, her ribs are hurting terribly, her one foot has some swelling, she went from eating everything to not wanting anything, she’s emotional, and completely miserable. Watching her go through this is scaring me a lot. I’ve never seen get like this before (she’s 66). I don’t know what to do to help her.
    Any suggestions would be appreciated. She does have a regular Dr appointment this coming Monday, but I don’t know if we should take her to the ER, or if this is just something that has to run it’s course… and how long will it last. My fear is months or more. She’s having a harder time dealing with not being able to do anything. She’s normally a busy body, not one to sit much at all, so that’s very frustrating for her, too.
  • dorothy November 19, 2014, 6:38 am
    My husband was put on prednisone for pneumonia. He was on a dose of 40 for awhile and then lowered to 30 for two years. Every time they would try to lower the dosage he could not function. At one point I could tell tell things were not right. Found out they were giving him 25 in am and 5 at night. Argued with doctor until he agreed to try it my way – 30 at one time. It worked. Have never found the root problem.
    Took him to John’s Hopkins. The discounted all the local diagnosis. After a year he is down To 5 but is sleeping a lot. He has severe osteoporosis and has had 3 back surgeries plus many other problems. He was an extremely healthy man. Our family doctor has been very supportive. Knows the damage the prednisone is causing but he is a zombie w/o it. It has been a rough three years. We almost lost him 2 or 3 times. We will celebrate our 59th wedding anniversary today.
  • Linda November 19, 2014, 6:32 pm
    I have mild lupus. My doctor has tried several other medications on me to control the flare-ups. I was unable to tolerate them, so I was on prednisone which worked wonderfully for me. No side-effects at all. But, because I don’t want to be on any medications, I decided to wean myself off. I did it very gradually.
    This is day 18 of being off. I am exhausted, achy all over as I am in a mild flare-up and fighting with depression. This site has been so helpful for me and given me hope to continue to deal with these symptoms. I feel so sad for so many of you as I read your stories, although they have given me hope.
  • Tom November 23, 2014, 7:25 pm
    Quite frankly, I’m freaking out after reading these withdrawal symptoms. I have been on a 20mg dose for a week now, with no tappering. I was given the doses to deal with extreme canker sores in my mouth. I have read that almost everyone who comes off of prednisone have withdrawn symptoms. Today was my last day of taking this medication, I feel super healthy as of right now. But after reading all of these stories dealing with withdrawn symptoms, I’m pretty scare of the withdrawn affects that I have yet to feel.
  • Sammy November 25, 2014, 5:39 am
    Hi, I am searching for answers to how long prednisone stay in the body after stopping the drug. I was on 80mg daily for two weeks for thrombocytopenia. It’s an auto immune problem where my platelet counts were very low. My levels dropped to 1000 count and had spontaneous internal bleeding. I was given prednisone and anti seizure meds. I didn’t experience the shaking and anxiety many people suffered from on prednisone.
    I have been tapering slowly for the last 2-3 months from 80 -60-40-20-15-10-5 mg daily for a week span at each reduction. I did go a bit crazed with the blurry vision and the mind fog. Told the first doctor and it wasn’t taken seriously. Nagged her to give me a script for a glucometer. The prednisone increase my blood sugar levels and had to take more meds to control it. A second doctor recommended mylanta after breakfast and before the prednisone to soothe the digestive tracts.
    Another side effect is I been gaining 1-2 pounds per week with prednisone. I look like I’m pregnant with the barrow belly and a fuller moon face. Been trying for 2 weeks to lose weight on elliptical but failed. Actually gained 3 pounds for my efforts. I do have joint pains but it’s not so bad. This is my first day off prednisone. So far, so good. Waiting for the drug to cycle out of my system so I can lose the weight.
    • GLOOM November 26, 2014, 9:37 pm
      In most cases, the prednisone should be fully “out of your body” within a day after stopping the drug. The half-life of prednisone is relatively short, thus it clears from your system quickly. The withdrawal symptoms are not from the drug still being in your system, rather your body attempting to revert back to standard functioning after the changes induced by prednisone. In some cases, it can take awhile before normative functioning is restored. Best of luck.
  • Jim November 26, 2014, 2:17 am
    I too am coming off prednisone after being on it for 5 years for poly myalgia. Worked well but my specialist hates the stuff with a passion. I am currently on 2 mg a day having reduced slowly from 6mg a day but the nausea and lack of appetite has caused me to lose 6 kg in 1 1/2 weeks. That won’t hurt except for the nausea and today I have the worst headache I can remember. Two panadine forte seems to be working but I am desperate to get off the stuff completely. I have the start of cataracts and skin problems and I now have low bone calcium to the point where I have osteoporosis, and now I am being treated for that. -Jim
  • Andrea November 28, 2014, 12:06 am
    I took a nasal steroid that caused all kinds of terrible side effects: Gastritis, muscular pain (neck, arm and chest), EXTREME fatigue, etc. It was awful and took me three weeks to figure out that it was the nasal steroid. This stuff is poison!! Tapered down–but it definitely messed with my blood sugar levels and blood pressure causing lightheaded feelings (which I despise) and dizziness. The fatigue is not as bad as when on the actual steroid, but I definitely am much more sedentary while ridding my body of this horrible med.
  • Elaine November 29, 2014, 2:10 am
    I have been on prednisone for two years and am now tapering at a rate of 1 mg per week. So far the withdrawal symptoms haven’t been too bad and I am now down to 4 mg/day. I have gone through periods of extreme fatigue, I believe the worst has passed on that front but there were days I couldn’t get out of bed and managed to sleep 18 – 20 hours a day. I now sleep 10-12 hours a day which is normal as I am struggling to get a rheumatoid arthritis flare under control. The only other withdrawal symptom from the prednisone is a full body rash.
    Actually it’s more like a full body itch, constantly scratching, it drives me nuts. I’ll be glad when that goes away. I have noticed a big decrease in appetite which will hopefully translate into losing the weight I gained while on prednisone. A lot of people find prednisone evil. I tend to think of it as the drug I love to hate. It helped me so much to get my inflammation under control but the side effects were awful. Hopefully I’ll be off it for good.
  • Dave H December 2, 2014, 4:45 pm
    I read these comments with interest as I have been on prednisone for 2 years with Polymyalgia/Rheumatica but my depression has been increasing lately & putting a long happy marriage at risk. I need to get of these as soon as possible but looks like I still have several months to go without risking cold turkey. I hope everyone understands & keep patience with this Grumpy old sod in the meantime! Then they can finally start trying to guess again what I do have as the specialist has already told me he thinks the original diagnosis was wrong.
  • Judie December 2, 2014, 8:09 pm
    I was on 25 mg of prednisone for 11 days. My doctor gave me a prescription for a slow two month withdrawal. Unwisely, because of severe intestinal symptoms, I quit the prednisone cold turkey. My symptoms are similar to many others above. Has anyone else had a similar experience, that is, the same doage and time on the medication? This is my third day off. Any idea of how long before I feel normal again?
    • Darlene December 11, 2014, 6:23 pm
      @ Judie, I am so sorry you feel this way. I had posted above a few months ago. It took me a few months and I am still not normal. I went to a gastro doc which took forever to get into and I had an endoscopy which showed gastritis. My whole digestive system was messed up from Prednisone and a Cortisone shot in August. My gyno sent me to an endocrinologist.
      Almost two months after stopping pred my cortisol was 22.It was the high end of normal and ACTH was 15. I just had it checked last Friday and my cortisol was 10.5 and ACTH 13. I have to now go for an ACTH stim test to see if I now suffer from Secondary adrenal insufficiency from this poison. Just keep an eye on your self and do not be surprised if you have anxiety weeks and weeks after these pills and feel crazy.I lost a bunch of weight coming off of prednisone.
      It affected me differently than most. I am scared that I now will have messed up endocrine system for life. All of this was in a two week period and doctors assured me it was fine. It takes longer than the double time on it as they say. It really affected me. My hair has been falling out for almost 4 months now. It also messed up my menstrual cycles. I had them but theye were weird. Hope you feel better.
  • Jeanne Robbins December 3, 2014, 6:45 am
    I have been on Panafcort for 16 years, between 10 mg and 5 mg a day dosage, I am desperate to get off because my skin has thinned on my arms so badly I only have to slightly knock myself and I have skin peeling and bleeding. I have been taking it for RA, but I have had enough. I just cannot do this any longer. I have to wear long sleeved tops all of the time because of the lacerations and bruising and I feel like a freak. Also after all of these years I am starting to develop moon face. Can anyone suggest anything, I will taper the dose of course, and not go cold turkey. Yes, the drug does help the RA, but it is a “good boy” / “bad boy” drug – a bit of a monster in reality.
  • CrimsonCried December 5, 2014, 4:29 pm
    I’m so happy I found this site to help explain why I’m feeling the way I do, all due to the dreaded Prednisone. My journey began in late March of ’14, while outdoors grilling and I just happened to inhale a fuzzy tree spore, one of millions we have floating around during the early Spring months here in this area. They look much like snowflakes, but they’re not. Within 10 minutes, I began to experience the most annoying, tickling cough, and nothing would suppress it. In the hours and days to follow, my condition turned into what I believed to be bronchitis or something similar to pneumonia, though this was different.
    I battled it for six+ weeks, continuing to go from bad to even worse with each passing day, and I was losing my ability to breathe, as well. Near the end of my first round of what I’ve now been diagnosed with as allergic asthma, I was unable to lie down at all, or much less get any sleep, until that April morning when I finally asked my husband to call 911 NOW to send an ambulance. He offered to drive me, but I needed the oxygen immediately or sooner! I could not draw a single cleansing breath, and I was literally dying. Thankfully, while we live deep in the woods, the nearest hospital is only about 10 minutes away.
    I was treated with blessed oxygen in the ambulance, but all of my vitals were skewed. They first tried the nasal type of oxygen delivery, but had to slap a mask on me because I was slipping away (ALS-Level 1). Once I was in the ER, I’d never seen a staff work so quickly and efficiently, but while they were doing all of that, they’d given me a massive shot of corticosteroids, then some breathing treatments, had x-rays, blood drawn, the full work up. Shortly thereafter, once stabilized, I was prescribed Prednisone, and was then released. I argued profusely against it, asking if there was anything else I could take orally instead.
    No. I’d heard horror stories about it several times over the years, yet never gave it too much thought because it really didn’t pertain to me at the time. However, I did not forget. I was on a tapering dosage for two weeks, don’t remember the mg strength, but as each of those fourteen days passed, I got a little more temperamental until the afternoon of that very last dose, when I blew up in a rage of anger over nothing. I don’t even recall what it was. Less than two months later, the same story was repeated, although I didn’t inhale a tree spore that time. Same scenario as before, however, the hospital kept me overnight for test results, more shots, respiratory therapy, and so on in an attempt to diagnose the underlying condition which was causing such life threatening asthma attacks.
    Nothing was found, yet I had even more corticosteroids injected and another tapering round of Prednisone. That was in early September. It is now early December, and I’m getting it again. I’m still suffering withdrawals from my second attack, such as the considerably noticeable weight gain to where no clothing fits, the 8 months pregnant baby bump look (at age 56!!), the facial and general all over swelling and those awful “cankles,” in addition to high anxiety and dread, fearing I may have to begin the entire ordeal all over again. I flat out refuse to ever allow that (speaking only for myself) evil toxin to be administered to me in any manner, as I’m about half convinced I’m allergic to IT as well!
    I have both home based and portable oxygen, emergency inhalers, a nebulizer, masks, etc., but nothing’s helping, and I’m scared to death of what the next few weeks have in store for me. Appears I’m allergic to breathing at this point, and also at my wit’s end. I’m hosting Christmas festivities for 30-35 family members and friends once again this year, and my plan is to keep fighting this. If I absolutely must go to the ER again, I’m hoping with all of my heart to hold off, if at all possible, and do it a few days before our gathering on Christmas Eve, because I shouldn’t have the unpredictable rabid, Prednisone crazies yet…I hope.
  • john December 10, 2014, 11:34 pm
    I was prescribed Prednisone 30 mg for 8 days, 2 days ago. I have taken it for two days but after reading this I am in panic I need to stop asap. I suffered from cough for 6 weeks and this helped me within 24 hours. Can breath again. I am prone to anxiety attacks and depression and can not even imagine going through that hell. I was not advised about tapering. I am going to start tomorrow and stop all together.
    I should have been advised about this. I do have a head rush after taking 30 mg, eat a lot, am confused and disorientated. All in all I have taken 30 mg for 2 days and I ma going to take 10 mg for the next 2. I want to sop after that. Please help. Should I do this or should I continue the same (30 mg) for eight days and then cold turkey?
    • joyce March 22, 2015, 3:09 pm
      NEVER quit prednisone cold turkey. You could shut down your adrenals and die! Always…wean SLOWLY!
  • Roya December 11, 2014, 4:42 am
    I’ve never written on one of these before but if it can help someone else look at EVERY OTHER OPTION before taking this drug, it’s worth it. I was given 60mg for 7 days for bronchitis. No taper. My right side of my body got numb. My ears clogged. I was close to fainting. Felt like the flu and my head was in the most intense vise anyone can imagine. It was so intense it was effort to move my jaw. Scale of 1-10 in physical pain…an 8.
    I did have to teach for hours on that day, once the 60mg got back in my system, I willed my way through and was able to stand all day. The next morning was a moment of reprieve. I was put back on an infusion on 60mg all at once to try to get me back for 2 days then 50 for 2 days etc til tapered to 5. It’s been 3 days and my head feels like it’s got a constant singe of fire on it. I’m sweating on and off. I can’t control the reaction to nearly faint and not be able to lift my head off the pillow.
    I can’t trust myself to drive or be alone w my toddler because its like being on an up and down physical roller coaster I can’t predict or control. Suddenly I may not be able to stand and vision becomes a bit blurry. I HAVE FAITH this will all be a distant memory in a week or less. I am MADDENED at the casual nature with such potential POISON. Just weigh your options as I understand it’s not the same for everyone but you do take the chance and IF YOU DO…NO MATTER WHAT…TAPER OFF.
    • john December 12, 2014, 1:49 am
      Thank you Roya. I took it for two days. This morning I decided not to take the rest of it and feel so much better for it. I was advised by my GP i did not need to taper off as it was a very short course. It was a strange place I found myself at and I did not like it. I was at work yesterday and I lost it. Could not remember who I was calling. Sort of high and confused. My heart was beating fast and I had blurry vision. Unpleasant experience. I did not sleep last night again and had even more confusing morning. Could not face another six days of it. As you say, any other option … Many thanks.
      • Hilary March 16, 2015, 7:52 am
        Just finishing my third course of pred since December last ( three courses in three months! ) each course was a week starting 40mg a day for three days and tapering off over a week. First time got great relief from bad cough and sinusitis with only mild side effects… cure didn’t last and was back on again after four weeks. This time side effects kicked in, but passed quickly enough and cough and sinusitis calmed.
        Thought I was through all symptoms and side effects after two weeks and was getting myself geared up to normal life then bang! My husband caught a relatively harmless virus which only affected him for two days but it hit me like a ton of bricks and I was back again to square one, another dose of pred. My warning is, immune system is obviously very weak after a course of pred I was a sitting duck for every bug in the air. Just finished my last pred three days ago and withdrawals have kicked in big time…
        Anxiety, hunger, no taste, blurred vision and dizziness, also troubling dreams and depression and barking at everyone for very little reason. I cannot understand why I was put on such severe medication for a virus. It is really tough getting it out of your system and from what I read here, this can continue for a long time. Never again, there must be some homeopathic alternative out there. Anyone heard of anything?
  • Oscar December 12, 2014, 2:01 pm
    Off predisone after two and a half years. Started with 10 mg for PMR. Came off slowly but now I have such sore legs and knees. Is this a common side effect or I may have developed osteoartitis? Haven’t been back to the doctor’s and trying to get through it.
  • luciano December 19, 2014, 9:33 pm
    I was on prednisone for only 5 days 50mg per day for a sinus infection. The doctor told me I can quit cold turkey as I wasn’t on it for longer than 7 days. After I quit cold turkey withdrawal symptoms were horrible and almost unbearable. I was emotional angry confused, depressed fell like crying or arguing all the time and I didn’t have any motivation. I suffered all this just for having a sinus infection and the doctor not telling me side effects of prednisone. I’ve been off it for a week and still do not feel a hundred percent myself. I would never take this medication again and I would never recommend it to anyone unless it’s a life or death situation. Doctors shouldn’t prescribe this to anyone unless it’s the last resort. Others should be prosecuted as this medication can and will ruin the quality of someone’s life.
  • M December 21, 2014, 9:57 am
    Well now I’m wondering why I’m feeling so sh*tty. I have had two courses of steroids in about five weeks due to a neck injury during a massage (yes, it can happen). I have a pinched nerve in my C6/7 and still waiting for it to improve. The steroids really worked for my inflammation and got rid of the excruciating pain that I had from this. Worst pain I’ve ever had except for childbirth. I am having the worst anxiety and depression. I couldn’t figure out what is wrong with me until finally googling withdrawal symptoms.
    I can’t sleep (not that I could while taking it anyway) and I can’t get in the Christmas spirit. I don’t give a flying sh*t about pissing people off and that is so not me. I don’t want to decorate, I’m short-tempered, I’m ready to rip people’s faces off and can’t wait for work this upcoming week – I hope I don’t mouth off at the wrong time. I am one of the happiest people on the planet and I cannot believe that this has affected me this way. I never ever am this way.
    All the other comments are making me pretty nervous. Bad enough the effects of the pinched nerve but feeling like I’m coming apart at the seams is not good in my line of work. The weight loss is a good thing…lol…but seriously. Hope everyone is starting to feel better. I was on some kind of pack for 6 days, tapered off. Prednisone for 12 days, 60 mg for 3 days, 40 for 3, 20 for 3 and then 10 for 3.
    I stopped taking it three days ago and I am seeing anxiety and depression and the short-temper that I haven’t seen in years. Reminds me of when I was married to my ex (LOL). For me to not have the Christmas spirit… that makes it worse. I took a sleep aid last night, muscle relaxant and a pain reliever. Wide awake after three hours. I’m cleaning and pulling out decorations to finish putting some up. This does not bode well for the day.
  • Mel December 22, 2014, 8:43 am
    I was given Prednisone for 5 days due to an abscess in my ear, and now I regret ever going to the doctor! I stopped taking the drug 2 days ago, and less than 12 hours after taking the dose, my entire upper body felt bruised and very sensitive to the touch. It started with the front of my neck, and moved down into my ribs, chest, shoulders and lower back. It got to the point where I was struggling to lie down without wincing. How is it possible to suffer such bad withdrawal symptoms after such a short dosage? I’ve also been shaking and my heart rate has been increased – Randomly started crying last night as well? Which is not like me at all. I will NEVER take this medication again, and wish that the doctor had actually explained the side effects before prescribing it.
  • Dale December 25, 2014, 3:53 pm
    I was prescribed Prednisone in 2012 for PMR. Dosage was 20mg. Tapered starting immediately. Pain would return and Rhuematoligist upped dosage to 20 again with taper after 1 month. Since my last taper start, rheumatoligist said no longer have PMR. Feel like crap. Sore muscles, achy, tired. Sore shoulder for 3 months, had ultrasound that found no problems. Went away as fast as it came with no reason, then hip started hurting for no reason, then neck then chest and back.
    Comes and goes with no reason. Doctor thinks I’m crazy. So happy to have found this site. I justifies my feelings. I thought, I had an injury, a disease, a pinched nerve, cancer, flu, low threshold for pain, was just a complainer, PMR, or was just crazy. After reading your posts, I realize what I have is just from the taper off Prednisone. My symptoms are not as bad as many of yours, I really empathize with your struggles.
    The knowledge will not make the pain go away, but at least I will have the peace of mind of knowing what’s happening to me. I am currently at 3mg and plan to go to 2 today, 1 on New Years Day and 0 on January 5. I will put up with the symptoms secure in the knowledge that they will eventually go away. Thanks to all for helping me to find my problem.
  • Lyn December 28, 2014, 4:18 am
    I’ve been on prednisone since 2006 for rheumatoid arthritis. I ran out and forgot to fill it… that was a big mistake. I am weak, out of breath, my stomach hurts, I have a headache and the joint and muscle pain is indescribable.
  • Chere December 29, 2014, 2:53 am
    I have been on Prednisone since June 2012. I’m down to 2.5 mg per day. When I first started taking it, I was taking 10 mg twice a day. When my RA flares up, my doctor increases the dosage for short period of time. She told me that I should be able to stop since the dosage is so small. I thought I’d just stop a couple of days ago, but woke up with a horrible headache right behind my right ear.
    So, I guess I need to drop it to even smaller doses before I stop. My sister, who is a registered nurse, griped at me and told me I couldn’t just stop. Guess I’ll need to watch my blood pressure too. It never was high until Prednisone and I’m taking meds to bring it down. Maybe I won’t need the blood pressure meds once I’m off.
    • Tony December 30, 2014, 2:16 pm
      Hi – I was prescribed 70mg per day of Prednisolone (which I guess must be the same as Prednisone) for about 16 weeks (for auto immune haemolytic anaemia) and then dropped down by 10mg per day for a week (ie. 60mg per day for a week, then 50mg per day for a week – then 40mg – 30mg – 20mg – 10mg) until I was down to 5mg per day for a week. I was then on 5mg every other day for a week then I stopped completely about 4 weeks ago. My symptoms are very much like influenza, i.e. joint and muscle aches, headache and nausea but the worst of it is I can’t walk very far at all without getting exhausted and a very aching lower back. From the above posts, it’s pretty clear these must be withdrawal symptoms but does anyone know how long they last for – especially the bad back?
  • Kayleigh January 2, 2015, 12:59 am
    I was on 40mg of prednisone for 5 days then tapered myself down to 20mg for 2 days. My original dosage was 40 mg for 6 days then off cold turkey. I’ve been on this frequently (at least once a year) for my asthma. I knew better then to cut it off like that. I usually get prescribed more of a taper. This time being on it had been hell! I have anxiety disorder anyways, out a steroid on top of it and I’m crawling out of my skin.
    I’ve been off of it for 4 days now and am still getting anxiety attacks! My whole body had felt like a giant bruise and I’m super tired. A new symptom is my left arm feeling weak ( like it fell asleep ). It comes and goes, but is very unnerving! I feel like I can’t grip anything. Add a racing heart to that and I thought I was having a heart attack! This medication is horrible. I hate taking it 🙁 and to think they prescribe this to kids too!
  • Sue Koningen January 7, 2015, 11:18 pm
    I have been experiencing all of the side effects as listed here as I reduce my long term use of prednisone, and feel so thankful that I found this site. I now know that I am not imagining this, it is real and I feel that I can go back to my doctor and make her more aware of the dangers involved with withdrawal from this drug. Thank you so much.
  • Carla January 10, 2015, 3:53 am
    One day I went to the ER b/c of my asthma. The md gave me prednisone 60mg once every day for 5 days. Literally the next day off it the WORST side effects. The worst body ache. I felt like I did an extreme full body workout, had a migraine and a bit anxious. The second day I became faint and dizzy. I had a FULL BLOWN anxiety attack! My heart was beating a mile a minute. I felt like my heart was going to come out of my chest.
    I thought I was going to die. I head back to the ER they do a cat scan,x ray, blood test, urine test everything came back normal. They could “supposedly” not figure out why my anxiety was high. I told them is probably a reaction to the prednisone, but of course they are not going to admit that. They discharged me with an ibuprofen RX! They did not give me anything for the anxiety or for my irregular heartbeat. I call my primary and she prescribes me xanax 0.025 and propranolol 10mg for my heart. The pripranolol helped with the heart and the xanax helped for a few hours.
    At around 11 PM I get another full blown anxiety attack. I was mess!my body was shaking I thought I was doomed and was going to die. I cried and cried I thought I was going crazy. I call 911 and head back to the ER. They FINALLY gave some ativan to control the anxiety. This experience with prednisone is the MOST HORRIBLE experience I’ve EVER felt in my entire life. It has left me mentally broken with anxiety. I will never wish this experience to my worst enemy. Its been 5 days since my last dose and I’m STILL anxious.
    • Ken January 13, 2015, 7:07 pm
      Just came off three days of prednisone for 5 days at 40mg to control my asthma, I have been on prednisone before. But getting older now My wife and I both notice the withdrawal effects. I thought it was just me. The withdrawals range from mood changes to suicidal thoughts. Will I get back to myself? Worried!
  • Hannah January 11, 2015, 1:29 pm
    I have been on prednisone on and off for two years because of chronic hives. My hives are due to autoimmune issues. I woke up one morning with them and had never had them before. Most people get a few and they go away on there own or go away with a prednisone taper pack. Not me! I was on 60mg for weeks. My hives were debilitating in the fact they attack my joints, lips, eyes, and cover my entire body.
    I have been to 9 doctors, been in ICU for angeodema, and missed countless days of work (I am a teacher and worked sick for years until I got hives). I have been on rounds of antihistamines , immune suppressant drugs, and shots. Prednisone is the only thing that works when switching medications. The last round has been 8 months and I am tampering now from 60mg. I have gained 45lbs during this last round. I am down to 2.5mg a day and feel like I am dying from the inside out.
    My anxiety is high, muscle and joint pain are severe, and I have had bouts of nausea. The hardest thing is hiding these symptoms from my 2 year old and students at school. It hurts to carry my own child, especially up and down stairs. I feel exhausted and just want to sleep. I really feel doctors should be more upfront about the initial side effects and the side effects that can occur when you taper off after a long period of time.
    I have said a million times this is the best and worst drug out there. Best in the fact I wasn’t in pain and could function without pain from the hives, and worst for the side effects. I have learned you must become your own advocate for everything. Research is key before taking or trying anything. Lesson learned! I never want to be on this again!
  • Jason January 12, 2015, 3:55 pm
    Prednisone is now on my official “do not prescribe” list. I had sudden deafness in one ear, so my ENT put me on a high dose, per the text book diagnosis. Never have I had such a terrible reaction. I was on a: 60mg X 5 day, 50mg X 5 day, 40mg X 4 day, 20mg X 4 day, 10mg X 4 day. I’m normally a funny, fun loving person that’s easy going and playful. The first 3 days, I felt “roid rage” where I was mad at everything and aggressive, no matter how insignificant and petty it was. I drove my wife crazy and made my kids scared.
    I had to avoid them just so I wouldn’t chew them out over nothing. By day 4, deep, dark depression hit. REALLY bad. I couldn’t get out of bed. It was horrible. I’m never a depressed kind of person. By day 6 my mind turned to suicidal thoughts. I’m lucky, I had enough awareness of myself and the side effects of this drug that not only did I tell me wife about how stupid I thought the aggression was, but I kept a telling her my running notation of everything that wasn’t me, aggression, anger, depression, and the suicidal thoughts.
    I also called the doctor as soon as I realized how bad it was, my wife helped me out with that too. They tapered me off very fast, which helped with the mood swings, depression, and suicidal thoughts, but, now I’m left feeling burned out. I’m tired, I want to sleep in every morning, my muscles hurt, my joints ache, I have cluster headaches, heartburn, and after all of this, I still can’t hear out of my ear. So I essentially went through all of this for nothing. This was NOT worth it.
  • Lynn January 12, 2015, 9:28 pm
    I’ve been on 10mg of prednisone for 1 1/2 years. I have an autoimmune disorder. I’m trying to taper 1 mg per week. I’ve had nearly every withdrawal symptom except suicide and vomiting. I’m down to 2 mg per day now. I’m concerned that some of the side effects mean that because of the autoimmune condition I won’t be able to be without the pred. I want to be off this drug. I’m taking Methotrexate so I’m hoping I can be free of the pred soon. I guess I don’t have a question just appreciate reading the other comments and having a place to vent 🙂 I’m hoping all of you can be successful 🙂
  • Pam January 13, 2015, 9:15 am
    WORST DRUG ON THE PLANET!! I was on 65 mg daily for 2 months and was weaned off too quickly (10 mg/week). I took my last dose 12/27/14 and the side effects are horrendous: weight loss, shaking, insomnia, overwhelming depression, headaches among others. I’ve slept 4 hours in 2 days. It’s 4:10 am now and I haven’t been to sleep. I saw an endocrinologist yesterday and I’m having an a.m. Cortisol level drawn to see if my adrenals are shot. If only I could turn back time, I would NEVER have taken Prednisone. I pray all of us soon recover from this hell.
  • Jack Burton January 13, 2015, 6:00 pm
    I too have had a rough prednisone trip. I was already having enough problems to begin with and on top of it all the prednisone did nothing to help! I started feeling this general shakiness all throughout my body, increased heavier heart rate, and a kind of detached, panicky emotional state. These symptoms still are persisting now after a little over two weeks off this drug. I was on a short tapering course starting at 60mg for 3 days and working my way down to 10mg over the course of 11 days.
    I stuck it out because everyone tells you not suddenly quit. Like a lot of people here, I am filled with deep regret for having taken it and am desperate for a time machine to take me back to stop myself. Honestly, hard drugs aren’t as bad as this. I’d take them over this in an instant. The toughest thing is that symptoms like the shakiness: they’re just sitting there. Not getting any better or worse.
    Pretty scary. Anyway, we have to trust that our bodies know their baseline and have the natural inclination to return to it. If I recall correctly, Prednisone is fat soluble, so it’s gonna sit around in our bodies for a while as they wash this poison out. I know it helps a lot of people and it’s valuable in that regard, but for those of us sensitive to it, it is poison. I try to exercise, eat healthy, basically give my body everything it needs to handle this.
  • carrie January 14, 2015, 2:20 am
    I was on prednisone for 5 days for an ear infection. I was told to take 40mg for the 5 days. After the first 3 days I couldn’t handle it anymore, and went back to urgent care due to major panic attacks, and they told me to drop it to 20mg for the next 4 days. I did this for 2 more days and had to stop. I had major panic attacks, couldn’t sleep, had blurred vision and many other side effects. I was tested for everything, and my dr said it’s just me getting over the prednisone… it’s now been a month and a half and I am still having major anxiety issues. Anyone else have this happen and how long did it last? I can’t sleep because of it!
    • Jack Burton January 14, 2015, 2:29 pm
      I’m having leftover psychological issues as well, Carrie. My guess is since prednisone is a synthetic version of the stress hormone cortisol that it can easily traumatize your body and psychology. Coming at it from that angle, I’ve been trying to focus on what I can to bring my body back to baseline both physically and mentally. That’s all we can do. Like I said in my post, Prednisone is fat soluble so it can take a while to actually purge it out of your system. So eating healthy, exercising, drinking lots of water, etc… Providing everything we can to our bodies to normalize themselves. I’m sorry you are having a rough time too!
      • Paul January 15, 2015, 6:30 am
        I am 49 days off Prednisone after 2 yrs of treatment for Behcet’s, a less-known autoimmune disorder. My dosage was 25mg initially, tapering by 5 mg per day (5 days total) with remissions (no drugs) usually lasting anywhere from 3 to 12 days, then I would have to initiate the same regimen for symptom treatment again (and again) Sometimes I would just start at 5 mg and go 5 days at that, successfully to break the cycle. Because of my experience and past as a substance abuse counselor, I am on board with Jack in his pointing out that this drug is a fat-soluble compound and appears to be able to be stored in fatty-tissues, which affects length of lingering withdrawals.
        My withdrawal experience/time period and most others here seem to overwhelmingly support that. The idea is that some drugs are capable of “binding” with fats stored in our bodies and seem to take longer to leave the body than others that are not fat-based. The same model is utilized, to some extent, in drug-testing and defining treatment modalities in substance-abuse treatment models for different drugs. Anyway, I thought that with breaks of up to 10 days a couple of times a month over my entire treatment period, that it would allow my body to “learn” to produce it’s own hormones again.
        I could not have been more wrong. I am so grateful to all of you who have courageously shared here what published medical journals will not. Sadly, most doctors are paid to sell drugs, not heal people. We must help heal ourselves and continue to seek those who can help. My own current withdrawal symptoms are: impaired short-term memory, lack of appetite, sporadic fevers, severe depression w/suicidal thoughts, muscle aches in arms, ankles, calves, low back, slight headaches on occasion, very high levels of fatigue and anxiety. I also agree with the above that all bodies, habits, diets and and tolerance thresholds are different and react differently.
        It seems that we might all avail ourselves of the most valid and useful information for our own personal challenge, rally our allies, then make informed, healthy, thoughtful decisions. My next move, as long as I have symptoms manageable with OTC stuff (i.e. without Prednisone), is to go on a safe, sensible, I repeat…., SAFE, SENSIBLE cleansing fast to eliminate as much of the drug from my body as I can for now and see what life feels like. After 2 yrs in the hole, I want to at least get a drug-free baseline, if I can, for reference in the future.
        Now for the good part – After 6 + weeks, I can feel small improvements, but it’s weird. It’s not overall/all the time… It’s just like… the periodic windows of feeling more normal are getting longer/wider than before. I have no idea what the future will bring, but my own personal treatment alternative involving the taking of Colchicine (a type of poison) fills me with great inspiration to press on. You all inspire me to try harder. Ne jamais lacher le reve. (Never let go of the dream) ever.
  • Harry January 14, 2015, 6:24 pm
    It has been 12 days after weaning off of prednisone. I now am going through a tough time of it. I have lost all of my ambition and do not want to do much of anything other than sleep. My days are no longer days but nothing more then a continuation from the last time I awoke. I move only by instinct only to eat and that’s very little. I’m always thirsty and prefer liquids rather then solids. I feel as if I’m in another dimension and if it weren’t for the pain in my joints I believe that another dimension would be indeed a reality.
    If it were not for my son, I would be lost as he keeps me straight. I feel as if I’m at death’s door and wonder whether I will ever awake from this nightmare again. However, I try to soften the pain with over the counter pain killers that help some what. I believe the doctors do not know how to cope with my problem as the say nothing. If it weren’t for this website I still would be taking prednisone.
  • Steve D January 17, 2015, 6:14 pm
    Gastroenterologist put me on Prednisone for ulcerative colitis / crohn’s disease. Went as high as 60mg. 3+ years. Recently began to taper down by 5mg. Presently at 30mg. I also take Zoloft (for around 10 years) for anxiety / panic attacks. As the tapering down of Prednisone began, the anxiety / panic has returned in full force. Has anyone else had this reaction? The Zoloft had given me my life back again. Now I fear / feel I’m becoming agoraphobic. If I had known about these side-effects and the possible return of panic, I’d never have started with Prednisone…
  • Sussie Brand January 22, 2015, 1:45 pm
    I used Prednisone on and off for almost four years. I was weaned off it for 3 months. I stopped more than 2 months ago. I still have the most horrible pains and sometimes feel as if its getting worse. I feel weak, depressed, joint and muscle pain and cramps. My hands and feet hurts. I am going through menopause at the moment and as soon I sweat it feels like I’m allergic to my own sweat. I used Prednisone for a lung condition that was diagnosed after 3 years as Aspergilloses. I so wish I can feel normal again!
  • dollybrown January 29, 2015, 12:53 am
    I took it for 6 days for sciatica and it did control the symptoms, but I am have a difficult time readjusting. I feel exausted… and when I was taking it, my head hurt like heck. It felt like my brain was rattling and I couldn’t sleep. Not something I will take again, even if prescribed.
  • Angelina January 30, 2015, 1:17 am
    Wow, I can barely believe this. I have been asking my doctor about the side effects while actually stopping prednisone and he says what I have been having is not normal, but apparently it is. No appetite (none, zero!!! I could go 3 days without eating), no energy, fatigue, pain, nausea headaches…he only asked me about thrush on the tongue, but didn’t acknowledge any of the other symptoms I described as being prednisone related.
  • adrian February 1, 2015, 4:38 pm
    I got the flu, then bronchitis and asthma complications. I needed the prednisone 2 times in a month and it helped. Then it appears pleurisy set in either from the flu or a reoccurrence of valley fever. Put on 20mg for a week, tapering off to 10mg, then 5mg. I started having symptoms the first night – burning, tingling in hands, torso, legs and feet. Joints ache, just feel like crap. Wake up in the middle of the night with body tingling and pain. I feel like a junkie, want to get off but can’t function. Oh, I forgot about dizziness, shakiness and weakness in my legs. HELP.
  • Holli February 3, 2015, 8:28 pm
    Read a lot of the comments after the fact. I just recently was told I was going through an episode of PTSD. I then the same day contracted poison oak which took several days to show up. I had gone out into the woods to blow off some steam and must have rubbed it all over my face because that is where it first showed up. With my eyes swelling shut, I decided to go western meds… they put me on a pretty aggressive high dosage, which I felt great the first few days after dealing with a lag in energy from the depression/anxiety.
    But by day 6 I had such a horrible reaction (like I’d taken a whole bottle of no-dose) that I stopped cold turkey. Was fine the next day up until night time when the anxiety kicked in big time, my gut felt like it was in knots and no amount of fat/protein would do away with the hunger feeling…just made digestion a b*tch. Finally after another day of high anxiety and not sure where it was coming from. I was watching my thoughts and such, I called and got in with my psychiatrist.
    He practices Cognitive Behavioral therapy (love it and have had great success). He simply commented I had done what I needed to do for the eyes swelling and now we could use some Ativan to help me with the anxiety and to keep myself busy when it came up. Yet, I have been doing this today with great success so far and wanted to share: * after reading about the need for sugar/salt – Instead of going for just heavy, filling foods, I added natural sources of sugar (honey, maple syrup, fruit), but still am keeping the fat/protein (otherwise you risk insulin disturbance and more crazy making).
    If I keep a pretty constant slow intake of sugar (so you don’t spike your insulin), I felt I could manage the anxiety and low energy. I got some Raw Adrenal support at Whole Foods (that has bovine supplements in it), took one pill right away and another after a meal an hour later. Wow, that has helped TREMENDOUSLY. While my anti-anxiety meds helped keep me calm and to calm my gut last night (and am sure I am still benefiting from this), I have been spraying the Rescue remedy stress relief at the first sign of anxiety + get some sugar/salt in me – and I haven’t needed to take any more of the Ativan yet today and it is now 12 noon (last does was .25 11 hours ago).
    The adrenals love salt and potassium. In “Nourishing Traditions,” Sally Fallon suggests drinking a broth of potatoes and zucchini. I’m adding some burdock root, parsley, real sea salt and some maple syrup. To me it seems the anxiety comes in from the body not having any energy supply it can use with the adrenals shut down…so if you can keep the body fueled, at least for me, this is helping. Yes, food didn’t sound appealing at first, but getting the sugar/salt in there has helped tons to wake up my appetite.
    When I was feeling really nauseous, I started slow and gave my body time to respond. This helped tremendously. The body needs fuel, and the nauseous seems to have gone away when it got the fast fuel of sugar. Oh, for the poison oak I am now doing the high dosages of Vitamin C (when you start having the runs back off) and a baking soda/water mix on top for 10 mins and that seems to help. Yes I used prednisone for a reason which at the time I trusted was the right one. My doctor showed me that instead of beating myself and the doctors up for this choice, to trust it and to move on.
    It was me, knowing the body from a holistic standpoint, that decided to do more than even the doctor decided and I’m feeling better in just 3 days after coming off the stuff. I hope this helps someone out there take charge of their health and not buy into all the negative stories that this stuff is evil, the doctors are evil, etc… because those negative, downward spiraling thoughts can cause just as much damage if not more to your health at the moment. Blessings. -Holli
  • Gary February 4, 2015, 2:07 am
    I took from 60 to 30 mg of Prednisone for over six months because of chest pain caused by Sarcoidosis. I tapered off by 5 mg every two weeks and reached zero ten days ago. I have experienced most of the withdrawal symptoms described above. I thought I had the flu at first. The headaches, weakness, fatigue, joint pain and anxiety were the worst. This withdrawal is worth it to me because my Sarcoidosis was so much more debilitating. That said, I sure hope I get some relief from these withdrawal symptoms soon.
  • Katy February 4, 2015, 4:21 am
    This is the worst… I took 5 mg for 18 days. Off 5 days. Back On 4mg for 4 days. Have experienced: Panic attacks, nausea, headaches, severe anxiety. I’m out of work and my thinking is totally distorted. I was taken off of it after 4 days and have a history of bipolar disorder. My psychiatrist increased my Latuda from 20 to 60 my question day. Still very anxious. Trying to stay on top. Any suggestions? Thank you.
  • Anthony February 5, 2015, 2:34 pm
    For an allergic skin reaction, I took Prednisone for 7 days (60 mg daily), then 7 days (40 mg daily) and have been off it now for 2 days. Almost immediately it made me feel off, like my head was a little cloudy. It was manageable, but definitely a concern. After 5 or 6 days I started to experience intermittent knee pain and moderate-level headaches.
    After 10 days, the rash was 90% gone, but the drug itself was becoming more and more of an issue. I felt edgy and lashed out on more than one occasion, completely out of character. After 2 days off of it, I am experiencing the following: fatigue (I slept from 9:45 PM to 7 AM), bad acne (just started today) and intermittently my head feels a little cloudy. I will try to re-post in a week.
  • marky February 6, 2015, 6:48 pm
    I went to a doctor for an allergic reaction that caused a rash. He prescribed me with 60mg a day for 5 days. After the 3rd day I thought I was going insane: very nervous, anxiety, shaky, insomnia… I went to the doctor and told him how I was feeling and he told me to stop taking the medicine. Its been three weeks since I stopped and have never felt more horrible in my life. I feel like my adrenaline is on full speed. I’m hoping that I will be back to my normal self soon. What worries me is that it will take months for that to happen. Feeling pretty crappy. -Makkyo17
  • Amanda February 11, 2015, 10:42 am
    Wow! After reading these comments I feel I must add to them. I was googling the side effects of prednisone withdrawal as my Mother has become terribly depressed after tapering off them to nothing. She is elderly and was prescribed them for Polymyalgia a year or so ago. I hope she comes right soon as when she spoke to me she sounded so low and I can tell she is almost suicidal. She has even given up playing bridge and is just getting no enjoyment from anything whatsoever.
    I am worried it might take her quite some time to come right now. We live in christchurch, New Zealand and she was having a hard enough time after the earthquakes as many were/are as half her street has been red-zoned and demolished. Her Dr should have told her what the side effects might be of this drug. Her Polymalgia was brought on after a bout of suspected Legionnaire’s Disease which was inconclusive, however I believe it was due to the contaminant in the land her house is on.
    It was an old orchard and is classified as being unsuitable to grow veggies on and graze chickens, etc. due to either storage or overuse of Pesticides and so on. The earthquakes brought all to the surface with liquefaction and so on. Of course nobody will ever say much as they are too frightened of being held accountable :-/. Poor Mum.
  • J.Jarvis February 12, 2015, 9:12 pm
    My mother was first prescribed Prednisone for her asthma and COPD 30 years ago. With the exception of a few sporadic years, she has been on it since then. Her average dose was 50mg. That’s 50mg for 30 years. No doctor told her about the side effects. No doctor warned her about long term use. The doctor’s basically said “here, take this miracle drug, it’s perfect”. Now, 30 years later, she has an adrenal deficiency – without AT LEAST 5mg of Prednisone, her body cannot function. She has steroid induced Cushings Syndrome.
    She has osteonecrosis, and is now on a daily injection to fortify her bones. She just healed from 6 months from two broken legs from a fall, and now has 6 fractures in her spine (they’re guess is from sneezing or coughing). Her bones are extremely brittle from steroid use. She has steroid induced type 2 diabetes. She has edema and neuropathy, and water retention, which causes her legs to swell so much that it hurts her to walk, and she sometimes gets interstitial fluid leakage.
    She has steroid induced prolapsed bladder, causing severe incontinence. She has had 2 TIAs (mini strokes). She gets tremors in her hands and head/neck. She also takes an entire plethora of medications to counteract the effects of Prednisone. This has all happened within the last year. And the doctors blame it entirely on long-term Prednisone use. She argued and fought to be taken off the drug, and has tapered down from 50mg to 5mg, going down 5mg/month. She is now in severe withdrawal.
    Her tremors are so intense they look like small seizures. Her speech has become slurred and stuttered. She trips over her sentences and gets confused easily. Her head shakes uncontrollably. We’re actually going to the ER tonight so they can treat her symptoms (its been about two weeks of this). When our doctor suggested we go to the ER, his initial response was “just take 50mg of Prednisone, you’ll feel better instantly. Because of course, when in withdrawal from the drug that’s killing you, take the drug that’s killing you to ease the withdrawal.
    Never ever ever take this drug. Doctors use it as a treat-everything medication, and NEVER warn about the potential complications. It’s a dangerous drug, and it’s killing my mother (who’s only 59, I might add).
    • Tom February 23, 2015, 1:53 am
      Four years on prednisone. Up to 60 a day and now down to 7.5 Took almost a year. I had Adrenal issues and my doctor put me Achtar Gel injections to wake up my Adrenal System. It is called an infant drug and used on infants to stop siezures. Been around for 60 years. I don’t think I could ever get off Steriods with out it. My wife has me on vitamins like vitamin C to help support the Adrenal recovery. Worst thing about steriods is they shut down your Adrenal system. We kind of need it to function when start cutting back the steriods. I am lucky cause I have a great Rumy that get’s it.
  • Howard Hibert February 12, 2015, 11:59 pm
    Have radiculopathy. Neurologist that saw MRI said I needed surgery (pressing on my spinal cord) then the genius prescribes prednisone 60mg x 5 days 40 x3 20 x 3. Was OK till I stopped. Holy sh*t came unglued… was sleepless, dizzy, internal trembling and muscle twitches and pains back, leg, ribs, etc. Its been 5 weeks still have them the symptoms but slowly reducing. I was not in that much pain, but now I am worried I am compromised / not my best for my surgery in a week. What was that Dr thinking putting a patient in a variable Pea soup of side effects prior. Really? Just tells you how some doctors are absolutely clueless about this very dangerous drug.
  • Rita February 14, 2015, 10:48 pm
    I am 84 years old and have had Prednisone weekly packets off and on for over 5 years for COPD. No problem on withdrawing. Unfortunately in September my internist thought I had polymyalgia and started me on 40 mg of Prednisone. Actually I did not object as I called this med “my uppers”. I then developed blurred vision and according to the computer papers he gave me I could become blind. Long story, but had biopsy of right temporal artery which turned out negative! Internist told me to reduce Pred to 35 mgs by 5 mgs every 7 days down to 5 mgs each a week.
    I did so, and even reduced to 3 mgs and 1 mg for a few days. Now I am experiencing acute joint pains, mostly hips, shoulders, very fatigued, losing appetite and also have edema; not just feet and legs, but my entire body. It is very difficult to walk, get dressed, climb into bed. I am on a Lasix type med for the edema and don’t find this problem anywhere in Prednisone withdrawal. Cardiologist’s PA is looking into it. Any suggestions? Hard to find another internist when you are on Medicare. I am sorry for you young people suffering this way.
  • Loretta February 15, 2015, 9:01 pm
    Hi all. I was put on prednisone for 10 days at 40mg a day with no taper for a viral lung infection that didn’t clear up on its own. I am 3 days past my last dose and I feel like crap. My stomach has these occasional hot burning pains that only last a few seconds, but those are very painful seconds. Nearly doubling over in pain, then my skin hurts all over for awhile after. I have diarrhea, absolutely no energy and my hands are shaky. With 4 kids to raise and a big move ahead of us, this really sucks. I wish I was never put on this drug! I hope the withdrawal symptoms go away soon. Hubby leaves here in a few days for 4-6 weeks and I really hope I can cope.
  • Brian February 17, 2015, 4:27 am
    I have been on Prednisone several times I’m the past 3 years for my Constrictive Bronchiolisis Oblitereans. I really didn’t experience any major withdrawal symptoms until now. Because there are no cures or protocol for my disease my Doctor (just a Primary) and I have been open to trying different things to help, me feel better and improve my well being. Prednisone has help with my breathing and improved my health.
    This time I am experiencing really strong withdrawal side effects though. I started 80mg for 2 weeks and decreased 10mg every two weeks. I am currently at day 12 on the 20mg dosage. I have already started the joint pain and the abdominal cramps. I know that this is the beginning of the side effects and it scares me that they have already started. I also take Azithromycin 250mg along with the prednisone as my regime.
    It helps with the inflammation and also acts as protection because a simple cold will kill me, at this point of my disease. I also know this will be my last time on this regime. I can only do it every 12 months or so. At this point next year my lungs will be completely destroyed be the disease. I can say “yes” even though the prednisone has horrible side effects, both starting (which I get too. Weight gain 25 lbs, severe mood swings, hypertension, insomnia, decreased vision, tremors) and now I get to survive the withdrawal symptoms.
  • pat February 19, 2015, 6:51 pm
    I have asthma. My Dr. Has given me 6 cortisone injections over 9 weeks And I have been on three prednisone tapers during this time. I am in day two of the last taper. I’ve had constant dull headaches. Muscle cramping and aching. Weakness of arms and legs. Low back pains. Abdominal pains and fullness in abdominal area. Some increase in bowel movements, but no diarrhea. Fatigue. I’ve been on cortisone and prednisone yearly for asthma exacerbation. But never noted the withdraw symptoms to this degree before. I’m reading this is normal and it could take a while to get my body back to normal. Should I see my doctor? I don’t have to much depression or anxiety. Thanks.
  • Wendy February 21, 2015, 1:49 pm
    I have been off and on prednisone since 2006, before I go on the weaning portion, I am given three days of steroids through an intravenous in the emergency at my local hospital (there is a medical name for the intravenous but I don’t know it off hand), both these medications produce very bad side effects for me. The weaning part starts at 60mg and tapers down to 5mg by the end. I have noticed I am still experiencing the withdrawals and I have not been on prednisone since August 2014, but I am still having the withdrawals.
    I am not sure if this has to do with me being on prednisone since 2006. I don’t like how it makes name feel and how I am short with others around me, and the face to face interactions I have a very hard time with. This is a very good drug for the inflamed eye disease I have, but the side effects on my emotions are very hard to deal with. With this eye disease I have, chances of me going back on prednisone in 2015 is a good possibility since the doctors are still trying to find out the root cause.
  • Joan February 22, 2015, 3:43 pm
    Diagnosed 2 yrs ago with rare connective tissue disease, dermatomyositis, prednisone 60 mg for months, then 40 mg for months 30 mg, 20 mg, 10 mg, 7.5 mg, 5 mg then the withdrawals started. Tried to wean off by 2.5mg, withdrawals were horrible, had to go back up to 7 mg and wean 1 mg a month. I am now down to 1 mg and then March 1 will do every other day 1 mg and be off in April. This regimen is working, with little side effects. You have to give time for the adrenal glands to kick back in, slow is better.
  • elaine February 23, 2015, 4:41 am
    I have only been on Prednisone for 7 days now. I started to cut back the dose a few days ago but I was on 80 mg for the first 3 days. I started to get off the drug and I am now down to one pill a day, but the the pains are awful. My body is in such pain. My ankles, my neck, my back and my chest muscles all hurt. All I want to do is sleep so the pain can go away. The pain is much better tonight but it is still there. I’m moody because the pain is so bad. The spasms are awful. I am starting to find myself just eating and then feeling sick after I eat. This medication is not my favorite and if I have a choice I will never take it again.
  • Nick February 26, 2015, 10:05 am
    I was on prednisone for abot 20 days, starting off with 90 mg and then tapering to 30 mg per day. I was being treated for reversal reaction of Hansens disease MDT treatment which caused inflammation of my joints. After stopping prednisone I feel terrible, I have frequent headaches, muscle ache, low energy, low appetite and trouble sleeping. And no OTC pain medication helps.
    Every evening I feel cold, my body shivers for like an hour at temperature of 70-75, unless I put on layers, pullover some comforter and increase the heat to 80. After some time my body temperature shoots up making me all sweaty and feeling like I have mild fever. Although prednisone did fix my reversal reaction now I’m facing these problems for the last week, all this while taking my MDT medication regularly. Hopefully I recover soon from this withdrawal.
  • Lori February 28, 2015, 6:06 pm
    I am so thankful that I found this discussion and I am writing this with tears in my eyes. At the start of 2015, I battled a serious sinus infection that did not respond to 4 different antibiotics. I was ultimately put on Prednisone for a 5 day treatment. My head hurt badly through the treatment, but I tolerated it until day 4 when the pressure became so intense that I thought I was having a stroke. (I am 49 years old.) My ENT told me not to take the last two doses and that I would “self wean”.
    This was almost 3 weeks ago and I am suffering so badly. My regular doctor put me on ALPRAZOLAM for one week because she believes the prednisone messed me up a lot. This drug did not do much for me and I finished it yesterday. I feel like my shoulders are being pressed and I have constant tension headaches. My heart races and I have such severe anxiety. Is there an end in sight for me at some point? I am so depressed and feel so hopeless like I am going crazy. Please help me. Any advice is appreciated.
  • Rodger February 28, 2015, 11:01 pm
    I was diagnosed with Nephrotic Syndrome, and more specifically, Minimal Change Disease. Prescribed prednisone at 80mg per day originally. Took the drug at varying dosages for over a year. One month ago my Nephrologist (the second by the way) decided it was “poisoning me” and decided it was time for me to quit. At that time I was taking 40mg daily. Did a 3 week taper until I was off the drug. Unbelievable muscle weakness in my legs, between my shoulder blades, my neck and arms!
    A small flight of stairs makes me totally exhausted. Also upon standing I get dizzy to the point of nearly passing out. Blood pressure dropped so low that at times my blood pressure monitor would not register. BP averages 98/74. I also am experiencing diarrhea. Just had to vent. I spend any free time I have sleeping because of exhaustion. Hope no one experiences this to this extent. Been off the drug for one month. Just curious how long this will continue.
  • Kristin March 5, 2015, 12:35 am
    I’m 30 years old, diagnosed Crohns Disease in 2011 (when I was 26) went unmedicated almost the entire time until last August 2014. Went into a pretty bad flare up and was put on 60 mg of Prednisone per day two days after my flare started. This controlled my HORRIBLE Crohns flare within 48 hours and I thought this was a MIRACLE drug! I felt great for the whole first month I was on it! Then I started to hate it.
    I had severe depression, anxiety, “moon face” (swelling and roundness in the face), growth of body hair, shoulders, arms and even the face! These things only added to my insecurity and depression. I had the shakes as well as terrible insomnia. I have to take Ativan and melatonin to even begin to fall asleep before 1 am. My mood swings were so awful I would scream at people and tell them I hated them and threw and hit things. Just not myself at ALL!
    I began to taper 5 mg per week once I started Humira (which I’ve also heard terrible things about) By February I was off the prednisone completely. Now, I have such sever pain all throughout my body. My joints hurt so bad I feel like Im 90, I can barely move my hands in the morning. My neck feels like I slept on it wrong every single day. The pain is just everywhere and everyday it stays the same. Nothing has gotten better and I wonder when and IF I will ever be back to normal.
    I’m confused if it’s withdrawal from prednisone or side effects of Humira? Its a scary position. OTC pain killers do absolutely nothing for this pain. No one seems to take it seriously, even my doctors! When you have Crohns, prednisone can be a life saver, but it is also the drug from hell. Anyone else been on prednisone for a similar amount of time and experience these withdrawal symptoms? If so, how long did they last? I just want to feel better 🙁
  • John March 5, 2015, 2:40 pm
    Interesting article, I am currently in the process of tapering of pred and have found it very tough going. Made a couple of errors in the tapering and dropped too fast a couple of times and now I feel awful. I have brain fog all the time, have difficult concentrating and talking to people and I just feel lifeless and depressed. I am currently stuck on 5mg and I feel there is a long road ahead of me to get off them and go back to feeling normal and enjoying life again.
  • Brian M. March 7, 2015, 5:24 pm
    I was on prednisone for a treatment for my Kidneys. I was prescribed 60mg a day for 3 months then tapered down over the next 3 months. I have been off this drug since Dec 17, 2014. On the drug I had so many side effects from extreme swelling, fatigue, insomnia, and the list go on and on. Now off the drug I have extreme joint pain. I hurt all day and struggle to do everyday functions.
    I was physically fit when starting this drug and now feel like I am 90 years old. (I am 46 by the way). Would love to hear what people do to deal with the pain. OTC drugs just don’t work and my quality of life is terrible at this point. I just want to be able to do normal things again like taking walks with my kids and exercising. I hope we all recover soon from this Devil drug.
  • Arul March 9, 2015, 3:28 pm
    I was given prednisone for treating inflammation in the lungs from Tuberculosis. I was put on 16 mg for the first two weeks 8 for the next and finally 4 for the last two. I have to say the TB nor its treatment was as direct and harsh as the withdrawal symptoms I’am experiencing now. The dizziness and Sleep deprivation have subsided. The nausea and upset stomach symptoms are still really bugging me. I’am 24 years old and just now taken up a new job. The symptoms though not as painful as I think are REALLY a huge factor that makes you absolutely useless to function normally in your life.
    The anxiety and fatigue does not let you to think any other thing other than “will I be normal ever again”. But I feel that as it is evident from the above comments and million more on the internet, One must be patient to allow his body to adjust back to its normal self, which after reading through a lot of people appears to be at least 5 -6 weeks for a minimum dose and course. I believe we all can make it back to our normalcy, just have to be patient and brave.
  • Steve L March 15, 2015, 8:59 pm
    Currently on 60mg per day for the past 9 months for Myasthenia Gravis. Got all the symptoms of prednisone poisoning – plus to frighten blog readers further, they caused cataracts in both my eyes and I have had double laser keratotomy in the past 6-weeks. It is hell! Currently withdrawing by 10mg per month and I am feeling tired, depressed and stupid due to the memory loss.
  • Mark March 16, 2015, 5:43 pm
    I was prescribed 40 mg for 2 weeks. After 6 days I didn’t think I would live to see the end of 2 weeks. I looked online and saw that potassium deficiency is caused by Prednisone, and many of my symptoms matched with potassium deficiency. So I started taking potassium and eating things that had potassium. It is the only thing that helped me survive to the end of week 2. After 2 weeks my doctor. told me to just stop taking it, no taper. It’s been 5 days now and I feel like I have the flu. My body aches and I feel like I’m in a stupor. I can’t wait for this to end. I feel badly for those who have had worse reactions. This stuff is poison.
  • Lynn March 21, 2015, 12:11 pm
    Thank you for your posts as they have brought me to tears. I was on prednisone for 14 months for Giant Cell Arteritis starting with 60 mg day and then tapered off slowly. I already had arthritis but since stopping the prednisone 7 weeks ago I ache all over–I hate to complain but it is day and night. I am relieved to hear it is probably the prednisone withdrawal and will go away.
  • Victor March 22, 2015, 10:12 am
    I’ve been on Prednisone for the last 7+ years – at doses ranging from a low of 10mg/day to 20mg twice a day for severe Rheumatoid Arthritis.. After my most recent hospitalization, the RA team of doctors wants me OFF prednisone. So – I went from 20mg 2x daily to 10mg 1x daily. After 5 days, they reduced me to 5mg daily or 4 days, then zero! To say it’s been HELL is an understatement: Pain lower back, shoulders, wrists/hands, sore muscles (calf muscles mostly) and feel very weak.
    I’m jittery, dizzy, can’t focus my eyes, am exhausted after only 1/2 hour of being on my feet. So I sit down, and fall asleep for an hour or sometimes more. I think my taper-off was too abrupt/steep. SO – I modified it myself to 2.5mg 2x daily, then I’ll drop to 1x daily, and finlly 1x every other day. As SOON as I took that first 2.5, my withdrawal symptoms dramatically decreased. The slower – long term taper is working for me.
  • Barb April 6, 2015, 11:20 pm
    I was on prednisone for 20 months for Subacute Cutaneous Lupus. I had been up to 60 mg. then weaned to 25 then flared and so back up to 60. After a really slow weaning process (cutting back 1/2 tablet per month in 2 week intervals I am now off and have been for 17 weeks. At 1 tablet alternating with 1/2 tablet I began the joint and muscle pain then the fatigue and nausea. I have been here in the same state since then. My life has had to change substantially. I will see my internist in a few weeks and then he retires. If he tells me it will take “X” number of weeks, or months more then I will grin and bear it, if not I will feel totally abandoned!
  • THERESA April 8, 2015, 8:35 pm
    I’m so glad I am not alone. I’ve been on Prednisone for 7 moths for Sarcoid, and when I reported my symptoms to my specialist, he literally told me, they were not caused by tapering off the drug. He told me to contact my PCP and that I most likely had the flu. I started at 40MG and am now down to down to ten MGS every other day. With every cut I’ve had sweating, chills, severe headache, fatigue, vomiting, diarrhea, and joint pain. Guess I’ve had the flu all along huh? Beyond frustrated.
  • Willy April 11, 2015, 2:01 am
    Predisone has been an awful experience for me. Initially I was manic/anxious and unable to sleep for a huge period time. After a two week taper and end of the dosage I have been in a near state of constant panic. My doctor has prescribed Xanax for the next several days but it only slightly masks the anxiety. I have gone from sleeping four hours a night (interrupted) to over 12 hours and still waking up exhausted.
  • Sandy April 12, 2015, 1:40 am
    I was on prednisone for 2 weeks due to severe asthma. I have been off of it now for 1 week & have had horrible side effects. Thrush in my mouth so bad I could hardly swallow, face, feet & stomach swollen, dizzy, headaches, breathing problems, heart palpitations, shaking, panic feeling, even vision problems. This drug is poison! I’m wondering if I will ever feel normal again.
  • Ann April 17, 2015, 2:42 am
    I have been on 80 mg of Prednisone for 14 months to keep me loosing my eyesight in one eye. I had lost the eyesight on my other eye a month before it started in my good eye. Four months ago I started taper ring off the prednisone. I have been off of it for two weeks. It saved the eyesight in one eye and I’m so thankful. The last two weeks have been excruciating pain all over my body. My arms are to weak and painful to push myself up and legs to weak and painful to stand up. I can’t do anything but sleep so I won’t feel the pain as often. No prescribed pain meds help. There some other withdrawal symptoms, but not as bad as the pain. Is there any hope of getting better? If so, how long should I expect? I pray our Father God in Heaven will heal everyone through His only Son Jesus Christ.
  • Mick April 20, 2015, 10:10 am
    I was diagnosed with PMR about 9 years ago and was put on a high dose of Prednisolone by a consultant who said that it would last about 18 months but I should take Prednisolone ona reducing monthly basis. Every time I got down to around 6 mg per day, the PMR symptoms returned and I upped my dose – no reference to the consultant who never recalled me – through my GP. This went on for years until my GP finally referred me back to a rheumatologist 2 years ago.
    He wanted to put me on methotrexate but recognized that I needed to get off the prednisolone gradually. Not wanting to rattle I persuaded him to all me to do this before taking Methotrexate. Got down to around 3 mg a day when I completely seized up and couldn’t get out of bed. Result was him whacking me back up to 10 mg a day, to reduce to zero over 10 months and start 20mg methotrexate per week. My final 1 mg dose of Pred was at the end of last January.
    Since then I have progressively got worse during this 3 months. I ache all over, particularly knee, hands and shoulder joints, and my thigh and upper arm muscles. I don’t see this improving without a return to Prednisolone or something similar. I think after such a long time on this drug my system has just stopped producing the right chemicals.
  • Dante Warren April 26, 2015, 7:52 am
    I’ve been on it for 5 yrs after I stopped using it I had bad mood swings, depression, couldn’t focus, shakes, clouded brain, forgetfulness, 5 years later still dealing with it. God keeps me sane. I wish I would have refused it.
  • Kristen April 30, 2015, 2:06 pm
    Wow, no wonder I feel like I was run over by a truck. I knew prednisone was the problem, so after researching everything, I find it is true! Because I had a constant headache, neck pain for ten days, I was taking 12 to 15 Tylenol a day, NOT Good for the liver, but I couldn’t get rid of the headache, not even for 1 minute. I couldn’t sleep, I had to sit in a chair because my head hurt too bad to lie down. And how did my head ache start?
    After spending 6 hours at JC Penny’s beauty saloon (beauty is a stretch) getting my hair bleached! The girl bleached it not once but 3 times, kept me in that sink with my neck hanging over the lip. After hours of this, it pinched a nerve in my neck. Then the headache began. Finally ten days later, I had to call a Neurologist. She put me on prednisone 30 mg a day for 5 days, 20 a day for 3 days, 10 a day 2 days, then 1/2 pill for 2 days. For the first week it worked, my headache was gone, and I felt great, but then…
    OMG, on the night I cut back to 10mg I was in severe pain during the night, my knees hurt beyond belief, and I couldn’t move my legs? I had to reach down and physically move my legs. I literally, was half paralyzed. By the next morning, my shoulders hurt, to the point of having a hard time putting my top on over my head. I couldn’t even brush my hair. I hurt in every part of my body. I have a cane in my house, so I got that to support me. I felt achy in my muscles, so finally I got in the shower, turned the water on to scalding hot, and stood in there for about 20 minutes.
    I could finally move, then I started my research on prednisone and I found an article that drinking orange juice helps. I started a regiment of orange juice. Yes, for a while it does help. This is now the fourth day off the prednisone, and still I am dizzy, I can barely raise my arms, and getting in and out of bed is truly a challenge. Everything hurts, including when I walk, (with a cane) even my – okay, I will just put it out there – even my vagina hurts when I walk! (You may laugh, but really this is a problem!).
    I have a headache, I am sick to my stomach, to the point of vomiting, my blood sugar is low, and my vision is not right. This is so not right! I want to be better. I groan when I go to bed, I groan when I get up, I wince when I try to walk, and I have no energy. My back aches, constantly and since my last pill, I have to take naps all the time, I am just exhausted and haven’t done anything. Everyday, I want to feel better, but so far the pain is hanging on.
    I now understand the steroids took over my body’s job of creating hormones, and until my adrenaline glands figure out that they need to work, I will have to deal with the pain, and take Tylenol again. (I can’t take Alieve or Motrien). The only thing positive I see in all this is, I might lose some weight. So for now, I will continue with the hot showers, Tylenol and orange juice. Good luck to everyone who has had to take this drug. I hope you are lucky and will remain pain free when you taper off it.
  • PRD May 2, 2015, 7:16 pm
    I was on Prednisone for almost 18 months at 50+mg a day for a severe burn. I suffered every side effect known plus a couple of extra for good measure. It was hell trying to get off. Some of the side effects still bother me now, 15 years later. In the end, it took soaking in salt water and lathering in vaseline to help me heal and get off the drug.
    • Joan May 13, 2015, 7:01 pm
      PRD….just curious what side effects are you still having 15 years later! I was put on Prednisone 80mg the end of January to deal with my kidney disease. I was functioning for about two weeks and woke up one morning and felt like a different person who I did not even recognize. Have had depression and anxiety ever since. My kidney has got me down to 20mg now and starting 15mg tomorrow so I guess we will see how that goes. Hope you feel better soon!
  • Jan May 8, 2015, 5:11 pm
    I’ve been on prednisone since 2002, when I became allergic to the mestinon used to treat my myasthenia gravis. At one time I was able to quit (briefly) but had a rebound reaction of coming up allergic to almost everything I put in my mouth. My doctor put me back on 2 mg. a day, which I have been on for about five years. I just decided, with my doctor’s agreement, to get off of the stuff.
    One day of 1 mg caused depression that I couldn’t understand, as my life is great. Thanks for all the comments, as I will now take seriously my doctor’s recommendation to reduce over months rather than weeks. This drug has its uses, but is used far too frequently for mild problems that could be dealt with by other means. Poison ivy?? I’ve had that, and unless very severe, time eventually takes care of it. The prednisone is worse!
  • Joyce Schneider May 12, 2015, 2:39 am
    I have read every one of your posts, and my heart breaks for the struggles you have had to endure. My experience was a bit different; I brought my misery upon myself. Cutting roots, with no leaves, left me with poison ivy/oak internally. Was put on 10 days diminishing dose of prednisone…finished meds, went to ER, thought I was croaking, got 4 more days, 40mg, no taper. Finished now, and not having terrible withdrawal…
    I attribute it to the fact I have taken Thorne Adrenal Cortex during this whole ordeal, and feel that it has helped tremendously. I was introduced to this supplement through the website “Stop the Thyroid Madness”. (Have hypothyroidism for 30 years and use natural thyroid meds). Please investigate this adrenal support supplement; it has helped me tremendously. Good luck to all.
  • Shyanne May 12, 2015, 6:49 pm
    I have been on a low does of prednisone for about 7 years now 5mg- 2.5. I am now down to 2mg and plan to taper extremely slow. I am now feeling anxiety at night and in the morning. I will stay on 2mg until June and then try and shoot for 1mg. My stomach is also bothering me along with nausea a lot I have been trying to combat this with ginger water.
    I sure hope it works this time and my kidneys and brain function normal. This has been the best drug for RA but the worst for my body. I will post when I am fully off this pill and let you know what other side effects have happened. Thanks for listening. I am glad I am not alone. 🙂
  • Jodi May 16, 2015, 10:23 pm
    I have been on prednisone since 2008 due to Rheumatoid Arthritis. I tapered for almost a year from a high of 60 mg a day. Took the last dose of 1 mg about 3 weeks ago. It seems as though with each passing day I feel worse, severe knee pain, terrible shoulder and neck pain, nausea, headache, muscle spasms, hip pain. I can’t seem to get either my RA or Primary doctor to listen to me, they both assume that everything is either due to the RA or depression, maybe I need new doctors.
    I am just about at the point that I’m going to go to an acute care clinic and talk to an internal med doc or emergency room doctor. I’m supposed to start on a new biologic on Tuesday due to Remicade seemingly not working but that could be due to the prednisone withdrawal that was recommended by my RA doctor. I feel really horrible and sick. Is there any help or suggestions. It is so frustrating that neither doctor is listening.
  • Rita May 19, 2015, 1:21 am
    I have written before. A rheumatologist gave me more specific type of withdrawal taper. When down to 10 mg, try 9 mg for four weeks, then 8 mg for 4 weeks, etc. So far it is working unless I forget to take the Prednisone or take it later in the day than usual. Unfortunately I have developed sores in my mouth and dentist has me on 0.5 mg. Dexamethasone (which seems like a cousin to Prednisone) mouth rinse oral solution, but am not to swallow it. Pharmacist advised that should not affect the prednisone withdrawal. My hopes are up.
  • Grace May 19, 2015, 3:55 am
    Thank you for this. I thought I was going crazy with withdrawing. Been on it for over 5 months and well and beyond over it now. Everytime I drop dose I get so unwell. Sometimes have to stay in bed or at home away from people. I find everything or nothing makes me super emotional all the time.
  • Sylvia May 20, 2015, 2:17 am
    I’ve been on and off prednisone for 10 years. Everytime I get on it I start trying to taper immediately. Right now I’ve got agonizing pain, that old muscle/stabbing pain and fatigue thing going on. Just miserable. I am now on 2.5 mg and have been dropping .75 mg. each week. I’m wondering if anyone has actually come off this stuff and done well? Most here seem to have horrible lingering effects. Does it go away? How long does it take?
  • Kristen R May 21, 2015, 1:46 pm
    This is an update of how prednisone has affected my life. I previously did a post that says quote “OMGI feel like I’ve been hit by a truck” and that was after only 4 days off prednisone. I have now been off prednisone for 5 weeks and yet my side effects continue. I am so fatigued I still can hardly move my arms I barely walk with a cane. Mostly I have been relegated to a motorized scooter. I take vitamin C, vitamin D 800 units, potassium, and calcium 1500 milligrams.
    I drink lots of orange juice eat lots of bananas. Yet each time I try to eat I get nauseated. my vision seems to have bright diamond shaped lights in everything that I look at. I can no longer sleep in the bed at all because I no longer have the strength to turn over. My skeleton hurts, my knees kill me and my legs feel like they’re paralyzed…like heavy dead sticks. I sleep in a chair in the living room that has a motorized lift to lift my legs because I can’t lift them by myself.
    My husband does the cooking and he still work. In the morning he leaves my vitamin and a bottle of water And gives me a banana. I do a lot of crying and I feel very very suicidal. This is no life for someone who was so active I haven’t left the house in a month and a half and I Live my life in this chair. Do not let your doctors put you on prednisone for anything you might as well be dead, because as soon as you come off of this drug you will feel like you’re going to die anyway.
    The only thing that they can do for you is “nothing”! You take your over the counter Tylenol, you take vitamins, you drink orange juice, you eat bananas and hopefully your body will finally recognize that it has to make its own cortisol with those little adrenaline glands that sit on your liver. Maybe you will start feeling like a human being in a year so I hear… My God I hope it doesn’t take that long!!!
    Here’s hoping you will never ever have to be put on prednisone because if you end up with withdrawal symptoms your doctor will deny and say, “Oh there’s no such thing.” You feel like you’ve been run over by the bus they just threw you under! So if this whole thing is scary to you, it should be. Prednisone is your worst nightmare!
  • David May 23, 2015, 6:04 am
    I have been on the prednisone/corticosteriod cycle for 50 years. I fear that I am permanently damaged and the doctors just keep wanting to give me more. It is the most excruciating pain I have ever had. I simply want to jump out of my skin.

4.  2013 Jun;22(7):697-701. doi: 10.1177/0961203313490434. Epub 2013 May 24.

Predictors of corticosteroid tapering in SLE patients: the Hopkins Lupus Cohort.


Abstract

PURPOSE:

Organ damage in systemic lupus erythematosus (SLE) patients is highly associated with the use of corticosteroids. Doses of prednisone below 6 mg daily are associated with reduced organ damage. We now report on the largest prospective cohort study of predictors of prednisone tapering in SLE patients.

METHODS:

A total of 866 SLE patients (91% female, 50% Caucasian, 43% African-American, mean age 43 years) who consented for the Hopkins Lupus Cohort from 1987 through 2009 were included. The analysis was based on patient visits in which the previously prescribed dose of prednisone was 5 mg/day. We then examined the proportion of times the patient’s dose was reduced to below 5 mg/day (“tapering”). Among those patients who tapered and were followed for at least one year thereafter, we examined the proportion whose prednisone dose remained below 5 mg/day for at least one year (“Successful tapering”). Rates of tapering and successful tapering were calculated for patient subsets based on demographic and clinical characteristics.

RESULT:

The analyses showed that Caucasians, younger patients, patients with a higher level of education, lower disease activity, or absence of urine protein were more likely to have a prednisone taper. However, successful tapering was not dependent on age, ethnicity, or education. As expected, successful tapering was more frequent in those with lower disease activity. Successful tapering was achieved more often after the year 2000.

CONCLUSION:

Our study suggests that successful tapering of prednisone below 5 mg has increased since the year 2000, which may reflect the greater knowledge of the long-term harm of even low-dose chronic corticosteroid use. Caucasians, younger age, higher level of education, and absence of proteinuria predicted tapering, but not successful tapering. Ongoing cutaneous or arthritis activity were associated with unsuccessful tapering. Lack of disease activity, as expected, was the only major clinical variable that significantly predicted successful tapering.

KEYWORDS:

SLE; SLEDAI; corticosteroids; organ damage


5.  2008 Jul;7(7):643-6.

Topical tacrolimus 0.1% improves symptoms of hand dermatitis in patients treated with a prednisone taper.


Abstract

BACKGROUND:

Hand dermatitis is a chronic inflammatory skin disorder for which systemic immunosuppressive therapy is often needed. Topical treatments could complement the use of systemic corticosteroids.

OBJECTIVE:

To evaluate symptoms of hand dermatitis in subjects treated with a prednisone taper combined with topical tacrolimus 0.1% ointment versus vehicle.

METHODS:

Thirty-two subjects with moderate to severe hand dermatitis were enrolled in a randomized double-blind controlled trial. Subjects received a 3-week taper of prednisone and was randomized 2:1 to apply topical tacrolimus or its vehicle twice daily for 12 weeks. Disease severity was evaluated at baseline and at 5 follow-up visits (weeks 1-14). Any occurrence of relapse was recorded by patients.

RESULTS:

Twenty-two of the 32 subjects (69%) had relapse of their disease. The mean time to recurrence for tacrolimus versus vehicle was 48 versus 39 days, respectively (P = .78). A greater improvement of induration (P = .003) and scaling (P = .003) for patients with tacrolimus compared to vehicle was detected, as well as subjective improvement (%) from week 1 to week 12 (P = .04) compared to vehicle. Improvement in erythema (P < .0001), fissuring (P = .0003), pruritus (P = .06), and investigator’s global assessment (P < .0001) with tacrolimus was not found to exceed improvement with vehicle.

LIMITATIONS:

Small sample size provides limited power to detect differences in response.

CONCLUSIONS:

Topical tacrolimus improves induration and scaling, and there is a trend suggesting it prolongs the time to recurrence.


6.  2008 Jul;15(7):677-80. doi: 10.1111/j.1468-1331.2008.02146.x. Epub 2008 May 6.

Oral prednisone taper following intravenous steroids fails to improve disability or recovery from relapses in multiple sclerosis.


Abstract

BACKGROUND:

A short course of intravenous methylprednisolone (IVMP) followed by oral prednisone taper (OPT) is often used for the treatment of relapses in multiple sclerosis (MS). We examined the effect of IVMP plus OPT compared with IVMP only on neurologic disability 1 year after treatment of a relapse in patients with relapsing-remitting multiple sclerosis.

METHODS:

Two hundred eighty-five consecutive relapses were analyzed in a retrospective fashion. One hundred fifty-two patients with a total of 171 relapses received IVMP plus an OPT at the time of relapse whilst 112 patients who experienced 114 relapses received IVMP without OPT.

RESULTS:

There was no difference between the two groups in the baseline characteristics as well as the mean or categorical EDSS at baseline, at the time of relapse confirmation, and at months 3, 6 and 12 after relapse confirmation.

CONCLUSION:

Our observations suggest that OPT following treatment with IVMP for an MS relapse does not lead to improved neurologic outcome after 12 months compared with treatment with IVMP only. Moreover, our findings raise concerns regarding the common practice of using OPT following IVMP. Further studies are indicated to validate our findings and minimize exposure to systemic corticosteroids, well known for systemic toxicity.
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