Azathioprine Withdrawal

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August 28, 2012 | 21 Comments

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  1. Thanks for this story Ken! One thing it indicates, I think, is that when doctors say you must take a drug long-term or worse yet “for the rest of your life” this advice was probably not generated in a hospital clinic, but a MARKETING DEPT. This has become an economic strategy for the drug companies and a potential disaster for our health. Psychiatric patients are the canaries in the coal mine for this disaster but the majority of the population will be at risk pretty soon.

    Just recently I read the official “patient information” for the soon-to-be-released diet drugs Belviq and Qsymia. These are potentially dangerous drugs — Qsymia is half Topamax and half speed; Belviq can be habit forming and cause hallucinations — nice stuff! Each has only been shown to help you peel off about 5% of your body weight — and that’s with proper diet and exercise. For a 200-pound person, just ten pounds … if everything goes just right.

    And how are we to take these pills? You guessed it: “People are supposed to keep taking Qsymia or Belviq for the rest of their lives, unless they develop side effects or have other reasons to stop,” according to WebMD.

    If penicillin were discovered today, they would declare strep throat to be a lifelong illness. Take penicillin for the rest of your life to avoid relapse.

  2. Johanna, Thanks for reading the post. In the press that Crohn’s gets (on CNN.com especially) it’s always billed as a “life-long disease”. It’s not necessarily true at all.

    Patients need to demand exit strategies from their physicians for each medication their prescribed.

    A question that occurred to me while reading that journal article was: Are the statistical requirements for drug efficacy versus for drug withdrawal equivalent? It seems, at least on the surface of it, that there’s a really low requirement to get someone on a drug but a much higher statistical requirement for withdrawal. It seems to deserves some research and thinking at least.

    • The call for an Exit strategy is an absolutely key point. We need to find a way to use the evidence to make it clear to people when withdrawal is supported by the evidence. This will include some way to recognize that while taking a “poison” for months may be a good thing, as time goes by the balance of risks and benefits may change, if only because the risks from the treatment are likely to increase.

      • I ran across this today because I am considering withdrawal from this drug. I have crohns and had a 2nd resection in December. Since I have been on this drug, I have suffered the same effects you have and concentration problems. I don’t like that it is listed as a carcinogen either! I have lymphonic and breast cancer in my family and each time I go on something I feel like I am playing roulette with my body. I recently started having edema symptoms as well. (I only have one kidney as a result of I believe taking Remicade and developing kidney cancer but getting a doctor to admit it is never going to happen. Funny I didn’t have it before the Remicade, but that is another cross to bare!) I am really glad that I have read this article because I had thought of why they have not performed a scope to see how the disease is. If I don’t need this medication at this point, why am I on it. Not happy with my gastro because they flat out said that I am making a mountain out of the medication issue and any cancer side effects. I feel like I am that lightning rod for things to go wrong (have also had a lupus side effect from the Remicade as well). So thank you for this analysis.

  3. I was put on azathioprine for my Ulcerative Colitis. Have been on it for abou 2 1/2 months and I have horrible side effects. I am totally exhausted all the time, which is not like me at all, my brain is foggy , I have dizziness, and feel nauseus most of the time. I feel the side effects are worse than my symptoms and I don’t even know if this drug is helping me at all because I was on prednisone at the same time and I believe it was the prednisone that helped.

  4. cool been on azathioprine for last 20 years and stopped for last 2 months, feel better, but nice to get reasurrance that I am proberbly doing the right thing as have been in remission for 15 years at least.

  5. Thank you for this. I have been on this drug since For about 6 months now for refectory pericarditis. Every time I tried to lower my steroids it would come back so I was put on imuran. My back feels like it’s broken in 2, my feet hurt so much whenever I stand up from a seated position or when I get out of bed, I fel nauseous, tired, and I feel like my brain is on slow mode – can’t remember words and things like that. It is horrible and I going to fight with them to get off it. They put me on it because my symptoms constantly returned every time I stepped down my corticosteroids. But now that I am on cortef at only 15mgs a day it is obvious that I no longer need the steroids to control the pericarditis. Thank you for his article and this firum. My next doc appt will be seeing me really fighting to get off this drug. I feel like it’s making me sick. You can’t poison someone into good health!!

  6. I was on Azathioprine for about 12 months, It was causing my feet to swell and gave me so much pain I could not walk for three days on each foot in a 1 month cycle. I went off Azathioprine 18 days ago and the pain in my feet has been overwhelming to say the least. The pain seems to travel through the foot over about 10 days. 18th day off Azathioprine the skin on my legs (toes to knees) has turned read. Also I have had trouble with my bowels. I designed a diet that works! now I have to get my feet better. Also I feel better now off the Azathioprine. I can’t get straight answers from about 7 doctors now, so I will have to learn by experience.

  7. belay my last comment typo…..I was on Azathioprine for about 12 months, It was causing my feet to swell and gave me so much pain I could not walk for three days on each foot in a 1 month cycle. I went off Azathioprine 18 days ago and the pain in my feet has been overwhelming to say the least. The pain seems to travel through the foot over about 10 days. 18th day off Azathioprine the skin on my legs (toes to knees) has turned red. Also I have had trouble with my bowels. I designed a diet that works! now I have to get my feet better. Also I feel better now off the Azathioprine. I can’t get straight answers from about 7 doctors now, so I will have to learn by experience.

  8. Hi ken. Thanks for the article. , ive been on azathioprine for 7 months with presnisone for my autoimmune disease that effect the skin. I got high dose of precnisone 60mg per day for the first two weeks and then the doc tappered it down until 5 mg now. I have stopped my steroids for almost 4 weeks now. And im still taking azathioprine one every other day. For the last 5 months ive been experiencing the side effects of both drugs. Fatigue, nauseous, my feet hurt all the time. Joint pains. I wasnt feeling normal at all. Yes, the drug did help my flare. ive been going to many docs asking for the reasons of these side effects, none of them has any answers. Feeling so frustrated with these pains, i finally found about the withdrawal symptoms. Does anyone here knows how long will these pains last? Thank you for your help

  9. Ken, I just found you. I have UC with extra-intestinal manifestations and have been on Azathioprine since 2011. I was only on .25 for the first few years as I could not tolerate the drug. I have been on 100 mg for the last year. I started Humira (which is causing horrible itchy painful sores) about 4 months ago. I lost my healthcare yesterday, and am looking to get off Aza by myself. After reading the comments, I am left wondering if the horrible pain in my feet might be the drug! I also have IBD arthritis, so I don’t know. I am glad to find your site. The drug business is just that, a for-profit BUSINESS. People see Humira commercials with happy people in it. They never show the spring-loaded injection pen or the $40,000 annual cost. I’d like to hear about your personal withdrawal symptoms, if any.

  10. I have been on Azathioprine for 2 years to maintain my Crohns disease. I stopped taking it 3 months ago. I didn’t have any side effects on it, and don’t feel a difference now that I am off it! I just worried about the cancer risk, that’s why I decided to stop. I just hope I don’t flare up without them…

  11. My doctor put me on these for my crohhns colitis Iv been on them for over 9 years,and they have done me the world of good,I have since had 4 skin cancers removed,my doc said it is safer for me to come off them so I have been off them for nearly a week now and upto now I’m fine,I did have pain in my knees and tired all the time but I put that down to my other meds but we shall see

  12. Ive been on Aza for a few months now. I started getting sores on my hands legs and face. The nausea is awful, I’m exhausted all the time. I also struggle to get my bloods done as the wait is often a few hours and these need to be done every week. I’ve asked about getting an appointment but its just a case of take a ticket and wait. I’m still trying to hold down a busy demanding job and doing this every week isn’t really practical. I came off the Aza last week (although I need to speak to my IBD team) but since I stopped my sores are starting to clear up and my nausea is reducing. I’m not sure whats best

  13. Thanks for this article Ken!My husband got a very rare and aggresive skin cancer: Merkel Cell Carcinoma after taking Azathioprine for more than 10 years to maintain Crohns disease. The cancer is related to this medication and we didn’t know it until now. We should have stopped it long time ago. Hope this article helps others.

  14. Thank you Ken for the time invested to post this article and all your hard work.

    I have been on Imuran (generic azathioprine) for over ten years now, 100 MG day split dose 50 mg in am, 50 mg in pm…

    Tried tapering to 75 because my Rheumatologist said I should. I had all sorts of really rough adverse effects,..

    So went back to one hundred mg daily better. I didn’t think I had a lot of side effects from azathioprine, because methotrexate was AWFUL.

    So this is thhe 2nd day cold turkey day I’m going of the med. I Google basically if people had bad sie effects or with raw from stopping it.

    So after reading your info, all these posts, I am determined to drink lots of water, boost my immuneystem, and clear this immunosuppressant poison out of my body and see if some of these other issues I’m having are not from this medication. 10+years is a long time. I was also prescribed high dose minimum prednisone at the same time and took it for 6 years. It took a year to wean down enough for my endocrinologist to feel comfortable enough for me to switch to hydrocortisone which I still take for adrenal insufficiency. Also DHEA, my body doesn’t make it. So I take OTC.

    But back to the subject, you have done some awesome work and are helping me and a lot of others. THANK you, AND ALL WHO TOOK TIME TO share. That really helped me as well. 🌝🌷🍃🌺🍃🌸🍃🌹🍃👆😜

  15. Great article!

    After losing my natural kidneys to PKD I was lucky enough to receive a transplant in 2005. Recently I have had two episodes of skin cancer and am awaiting surgery to resolve a third. At a routine consultation yesterday I requested an alternative to the 75mg daily dose of Azathioprine and have been taken off it completely in exchange for an increase in prednisolone from 5-10mg.

    While I am aware that the corticosteriod comes with its own side-effects it is nice to be ‘aza-free’ and I am looking forward to less susceptibility to sun-damage and hopefully a return of some of the energy that I used to enjoy in abundance.

    Good luck to you all.

    Doug

  16. I’ve only been on azathioprin for about 3 months,and have been having divides,in also suffering shortness of breath does anyone have this problem ,I was also plagued with mouth ulcers while on aza.

    • Yes Paul, I also suffer from shortness of breath on aza. Especially when Im tired, and well, aza makes you tired faster. On aza I also have trouble focussing. On aza I can only workout using fewer weight/resistance and for just a short period (at 40mins I am lightheaded and completely short of breath). Without aza I am stronger, have more energy, breathing is no problem and I easily workout out on max intensity for 1.5hrs. Shame my MD doesnt recognize this as ‘problems’; I have no problems as long as I can function (quality of fuctioning isnt assessed) and my colon isnt inflamed. Shortness of breath is simply categorized into: my breathing must be wrong.

      Regards,
      Jasper

  17. My gastro has just decided to prescribe 200 mg per day of Imuran and after reading various posts, it is rather terrifying. I am 67 years old and just spent 2 weeks in ICU after two months of flare up (7 months flare last year and no one could decide what was wrong)…all doctors recommended “take more Imodium.” I think another flare will kill me. Went by ambulance with BP 40/20 and the ER doc asked if my life was in order….gulp. My mother had lupus and I am convinced prednisone killed her. I would hate to start this drug and end up feeling worse. Do I take my chances for another flare? Blood tests are $478 per week and my Medicare supplement refuses to pay. Have not checked to see if Imuran is covered yunder my drug plan. This whirlwind started yesterday. Would appreciate advice. Take? Not take? Thanks, Mary

  18. I have ulcerative colitis and now Wegeners granulomatosis and I can’t help but wonder of the UC and meds made me susceptible to the vasculitis ?
    Anyhow, due to the UC I have been put on most of the immunosuppressive drugs but I just had too many and such awful side effects that it was worse than the disease.
    I am now in azathioprine and down to 5mg of prednisolone. I get awful spots on my scalp and have had 3 abscesses cut out of my back and upper arms. I decided to stop the azathioprine but I had such a fever on the first night that I went back onto it straight away. I was hallucinating and was in an awful state.
    Do you think that azathioprine can do this please

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