This post was written by Ken Spriggs and comes from his DIYEHR (do it yourself electronic health record) site. It brings out nicely how some people are only aware of the problems their drug causes when they stop. This is particularly true for people taking statins, but can be found taking anything from aspirin to azathioprine. Poison is an emotive word but all drugs are poisons which taken chronically will poison. Think arsenic; when taken in the short-term it clears skin and eyes but long-term not so good.
I found myself browsing the second or third page of azathioprine related google results and an abstract about withdrawing from azathioprine when Crohn’s is in remission. It’s personal because I’m someone who stopped taking azathioprine against the advice of my physician. I ended the drug about 15 months ago and I’ve not only remained in remission but I no longer have to deal with the side effects. There’s a lot I’d like to discuss about the article because I disagree with the conclusion and would like to question their process as well.
Title: A Randomized, Double-Blind, Controlled Withdrawal Trial in Crohn’s Disease Patients in Long-term Remission on Azathioprine Source: Gastroenterology – June 2005 (Vol. 128, Issue 7, Pages 1812-1818, DOI: 10.1053/j.gastro.2005.03.031)
Here’s a link to the full article and below is the abstract in its entirety. See what you think:
Background & Aims: An open study reported that patients with Crohn’s disease in remission who have taken azathioprine for longer than 3.5 years are at low risk of relapse when azathioprine is discontinued. To confirm this observation, we performed a multicenter, double-blind, non-inferiority withdrawal study.
Methods: Patients who were in clinical remission on azathioprine for ≥42 months were randomized to continue azathioprine or to receive an equivalent placebo for 18 months. The primary end point was clinical relapse at 18 months.
Results: Forty patients were randomly assigned to receive azathioprine and 43 to receive placebo. Characteristics of patients at entry were similar in the 2 study groups. At 18 months, 3 patients had a relapse in the azathioprine group, and 9 had a relapse in the placebo group. Kaplan-Meier estimates of the relapse rate at 18 months were 8% ± 4% and 21% ± 6%, respectively. The hypothesis that placebo was inferior to azathioprine was not rejected (P = .195). Among the baseline variables, C-reactive protein level >20 mg/L, time without steroids <50 months, and hemoglobin level <12 g/dL were found to be predictive of relapse in the multivariate analysis.
Conclusions: This study shows that azathioprine withdrawal is not equivalent to continued therapy with azathioprine for maintenance of remission in patients with Crohn’s disease who have been in remission on azathioprine for ≥3.5 years. Thus, azathioprine maintenance therapy should be continued beyond 3.5 years.
Ok so I had to read that last sentence twice because it doesn’t seem to go with the rest of the abstract. To me it looks like in the placebo group there were 34 out of 43 which didn’t relapse. That’s phenomenal! That means 79% don’t need azathioprine! Yeah! No more achy joints, nausea, fatigue, diarrhea, trips to the pharmacy, money spent, blood tests, not to mention azathioprine is listed as a carcinogen.
Let’s look at the azathioprine group, they experienced 3 relapses out of 40. If you apply that knowledge to the placebo group it implies that not 9 people relapsed because of azathioprine withdrawal but only 6 relapsed. Three, we expect, would have relapsed anyway. This means we should expect 37 out of 43 to remain in remission. That changes the 79% to 86%! Even better!
Based on the evidence here’s the conclusion I would think is more responsible to give a Crohn’s patient: There was as trial done which included a fairly small number of patients and it showed that if you’ve been in remission (a Crohn’s Disease Activity Index score of less than 150) for at least 42 months and are still taking azathioprine then you can consider stopping. You stand an absolute chance of 9 out of 43 (21%) of coming out of remission but only a 6 out of 43 chance (14%) of coming out of remission because you stopped azathioprine.
Contrast this with their conclusion: “Thus, azathioprine maintenance therapy should be continued beyond 3.5 years.”
If you didn’t get my point think about it this way. Suppose you had a treatment which worked for 79% of patients and it had no side effects to speak of. Would this not be a wonder drug? Of course it would! Call the marketing department, this one’s gonna be an easy sell! In this case the “wonder drug” is NOT taking the azathioprine and, unfortunately, there is no marketing department to call for that.
Further consider you’re one of the 34 patients in the placebo group who remained in remission for 18 months and then your doctor tells you that you were in the placebo group but to start taking your azathioprine again. What? Would this seem like reasonable advice? There’s no possible way I’d start the medication again. Why would anyone in remission want the side effects? It’s a senseless conclusion for the vast majority of the placebo group.
To turn their conclusion on its head again, we can say that staying on azathioprine only helps about 14% of patients stay in remission.
This brings me to questions about methodology and resourcefulness. The paper acknowledges that azathioprine has side effects but it makes no attempt to quantify them. What they could have done is to ask the study participants at the end of the trial if they thought they were in the placebo group or not. It’s crazy to me the researchers overlook this. Participants could also be asked if their quality of life improved during the trial. That’s actually the most important thing of all! Suppose 79% of participants in the placebo group said their quality of life improved while no one in the azathioprine group did. (It’s also possible, though unlikely, for someone who did relapse to report that their quality of life improved. This would happen if the side effects were worse than the relapse.) But alas, this information is MIA. But why? Quantifying side effects should mean a lot to a study about a drug. It could always turn out that side effects are worse than treatment. These researchers completely ignore this possibility. Bad science.
To shore up this massive design flaw in the study participants should be asked questions about the side effects of azathioprine before the study begins, during the study, and also after.
I’m reminded of a quote by David Healy from Pharmageddon: There is no evidence based approach to determining whether treatments have injured a patient or what to do when it happens. Why ever not?
(RxISK.org is a patient oriented organization dedicated to researching and reporting side effects.)
There’s another important issue I’d like to touch on. When I went through my simple analysis I didn’t once mention statistical significance. In order to disagree with the conclusion there was no need to think about statistical significance, we just had to count.
Now I’d like to question that perhaps the entire design of the experiment was amiss. Bare with me cause this is gonna get simple. The first sentence of the abstract says: “…patients with Crohn’s disease in remission who have taken azathioprine for longer than 3.5 years are at low risk of relapse when azathioprine is discontinued.” Why do you need statistical significance to answer this? You don’t. Instead what you do is gather a bunch of people who meet the criteria and tell them to stop taking their azathioprine. Then count the number of relapses over the next 18 months. That’s it. Really. You can then report that X% of patients relapse when they withdrew from azathioprine. If you wanted to say how many relapsed because of azathioprine withdrawal then you’d have to have one group stay on the medication and count the number of relapses. My take on the second step is to say it might be interesting to try and predict who will relapse based on bloodwork results or genetics or something related to lifestyle and diet. I’d guess the sample size of participants needed probably renders the idea prohibitive. And if a study like that isn’t plausible then the added knowledge is academic since it’s not possible to have any idea who will relapse. I think the study wasted half the participants, the entire control group isn’t necessary.
Ok so now you’re wondering why these authors with their PhD’s and MD’s did what they did. Well, they followed “This method universally used in non-inferiority trials…”. When I read something like that I’m reminded of the Sokal affair and Fashionable Nonsense. As these ideas apply to medicine Healy sums it up with this quote from Pharmageddon:
Explaining why Fisher’s ideas have such traction within medicine is not easy. Regulators have followed this line because the definition of statistical significance offers them a rule of thumb, an almost mechanical procedure that takes the place of a judgment call. For pharmaceutical companies, the issue is simple; Fisher’s ideas mean that positive effects in a minority of clinical trials can transform a weak and inessential drug into one apparently certified by science, while at the same time airbrushing its hazards out of existence.
But why do doctors follow this line? A number of medical academics have attempted to grapple with this, pointing out that current dependence on statistical significance testing has created a “junk epidemiology” in the domain of therapeutics. So Louis Lasagna, the first professor of clinical pharmacology in the United States, and later dean of medicine at Tufts University, who introduced randomized controlled trials into drug development, described the approach outlined above as “p-value madness”. For Sandor Greenland, professor of epidemiology and statistics at UCLA, “statical thinking [of this type] has produced a chronic psychosis” – by which he means that researchers relying on Fisher’s idea have lost touch with reality. Ezra Hauer, a professor of civil engineering from the University of Toronto and authority on analyzing road traffic accidents, explains that “in this manner good data are drained of real content. The direction of the empirical conclusions is reversed and ordinary human and scientific reasoning is turned on its head.” For Charlie Poole, professor of statistics and epidemiology at the University of North Carolina, “Statistical significance should be abandoned immediately and universally.” Ironically when faced with this issue in 2011, with investors’ dollars at stake, the US Supreme Court argued that statistical significance cannot be the arbiter of what an investor might deem as significant risk. But patients it seems do not have the same rights as investors.
The differences between much of clinical practice and other branches of science were starkly framed by Kenneth Rothman, professor of epidemiology at Harvard and editor of the journal Epidemiology, in a note about submissions to the journal:
“When writing for Epidemiology, you can . . . enhance your prospects if you omit tests of statistical significance… We would like to see the interpretation of a study based not on statistical significance, or lack of it, for one or more study variables, but rather a careful quantitative consideration of the data in the light of competing explanations… Misleading signals occur when a trivial effect is found to be ‘significant,’ as often happens in large studies, or when a strong relation is found ‘non-significant,’ as often happens in small studies.”
At the beginning of this post I mentioned I stopped taking azathioprine. It was about 3 and a half years after surgery and I’d been in remission the entire time. It’s been about 15 months since I stopped talking it and I haven’t felt this good since I was 17 and Crohn’s was years away from wrecking me. So here’s what makes me upset: Azathioprine has serious side effects. When I was on it I suffered diarrhea, chronic fatigue and my knees often ached as if I had arthritis. After I stopped taking the drug these symptoms cleared up in about 3 weeks with the exception of the diarrhea. I was like a new person. I went and took tennis lessons, joined a league, and started getting out of bed much easier and an hour earlier. The researchers never even tried to quantitate the effects of the drug. It was passively acknowledged at most. Side effects weren’t even considered in the conclusion. There’s probably physicians who have read this paper and they go on prescribing azathioprine even though someone’s been in remission for years. It’s sad and it’s irresponsible. Patients should demand an exit strategy from their physicians but that’s a different issue.
Lastly a few more questions to ask: What was the financial role of GlaxoSmithKline? The company was mentioned as providing the azathioprine in the form of their brand name Imuran but that’s it. Was the paper ghostwritten? Do the researchers have financial ties to GSK?
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.
So glad I found this article. I been in remission for 4 years. I went on vacation and lost my carry on with my meds. After 2 weeks of stopping this meds I started to feel increíble.
I didn’t panic after reading this article.
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.
Hi Tena I was diagnosed with Crohn’s 33 years ago. I was on Remicade infusions 11 years ago and it put me into drug induced Lupus also. I had to have a pericardial effusion from all the fluid around my heart. I was one sick person. I’ve been on Azathioprine for 10 years and would like to stop taking it. I also have joint aches, fatigue, and bad nausea. My question is after taking Azathioprine for so long do I wean off it or go cold turkey?
Hi Frances, I’ve suffered from chron’s for 23 years and had been on azathioprine for 12 years that I can think of. After 18 monthhs to two years of asking to come off them I was finally told that I could in December 2019. Five months later I thankfully have had no withdrawal symptoms from it.
The doctor who took me off them even said they were doing nothing for me apart from weakening my immune system even more.
Hope this helps.
Would you recommend stopping it after 5 months? I have ulcerative colitis and was put on this but I’m fine now just feel sick and tired all the time and also my kneecaps kill I would like to come off this drug but I’m needing some advice first
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.
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.
Hi I have had ulcerative colitis since 2002 and been on azathioprine for just over 10 years (in remission for this time). After seeing consultant he recommended I stop taking it immediately which I have and 3 wks later I feel as though I have much more energy and less achy feeling. I know it’s early days for me but how did u get on without azathioprine and did u have to restart it at any time. Thanks rebecca
I see the comment was old. How are you felling now. My daughter has been on it for 10 years. She’s almost 18. Been in remission
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!!
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.
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.
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
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.
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…
Interested to hear how you have been since the start of the year. Like you, I haven’t suffered any side effects from azathioprine (that I am aware of) but I’m not keen on staying on drugs vs trying natural approaches to manage crohns. I’ve been taking azathioprine for about 18 months and it’s kept me well. Was diagnosed a year prior. Each time I came off prednisolone the inflammation got worse.
Asked my consultant today about coming off azathioprine but she said I need to stay on it for 5 years for it to improve the condition long term. I wasn’t particularly happy with that but of course nervous to go against advice and make myself I’ll.
How are you doing now?
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
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
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.
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. ???????????
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.
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.
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
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
I know your comment is from 2016 and we are now in 2021 but I am hoping you are still around to speak to me directly. I too have been diagnosed with UC and later Wegener’s…two very “special” illnesses (especially the second one which no one EVER knows what it is…not even doctors). I’ve never come across anyone with this illness and I would like to compare notes. Is that ok? Please contact me!!!
Just wondering- how much Aza were you on each day?
So I have been on azathioprine for a year after trying humara, cimzia and remicade which to all I had side effects to. I have been struggling with this intense irritating itching all over my body mainly my arms and legs. It’s especially worse after I get in water this includes showering and shaving makes it so much more intense . I was wondering if anyone else has or is experiencing this? Just stopped azathioprine today to see if that’s the problem
How has everybody gone about getting off Azathioprine? Do you gradually wean yourself off or just quit taking it? I’ve been on this drug for 10 years and have fatigue, joint aches and bad nausea. I was diagnosed with Crohn’s Disease in 1983.
Hoping I can pick the collective brain here.
I have been on Azathioprine for 5 years for Crohn’s and it has done the job but over the past year with increasing side effects as described elsewhere.
I decided to try and get off of the drug in parallel with a more Naturopathic approach to life/healthcare.
So far I have reduced my dose from 100mg/day down to 50mg/day and the side effects have already improved. I believe the drug is out of the body pretty quickly (24 hours or less) but what I don’t know is how long would it be before I stopped seeing the therapeutic effects on my Crohn’s i.e. how long would it take before I would know if my Crohn’s symptoms were coming back.
The reason I am unsure is because I know it takes several months for the benefits to build up so could it be a similar time for them to decrease and inflammation to return, if it is going to?
My reason for asking is that I would rather leave it long enough with my current reduced dose to see what effects there might be before I cut it altogether.
It takes about 6 weeks until Imuran is out of the system completely. I stopped about 5 weeks ago because one of my liver enzymes was rising. I must have been on this medicine for almost 10 years. My achy joints are still a problem but that can be the Crohns.
Hi my name is Chloe. Ken, I read you article about the azathioprine withdrawal. I was given it for colitis but i hate the taste of the medicine and can’t take tablets. I’ve Been on it for a few weeks but strongly feel it does nothing for me. I’m already on infliximab. I was on steroids and gradually stopped them against the doctors advice. And I was fine!! I have stopped the azathioprine tonight but do you think it was a good idea or do I have to stop it slowly like I did the steroids?
Hello, I have been on Imuran for 8 plus years. I started off on 200 mg then have been tapering slowly. Currently I’m on 25 mg. I would like to completely stop this drug, however I am fearful of another bad flare-up or surgery. I was wondering if another drug could be taken with less side effects to help ensure no flare-ups? I have been in remission for some time, but really want to get off this drug. Is there a suggestion for a healthy/nature alternative such as aloe vera or fish oils? Thank you!
I was on Imuran for 10 years for a rare auto-immune disease called Pemphigus Vulgaris. I was originally on 150 mg of Imuran and 60 mg prednisolone a day. I came off of the prednisolone 5 years ago and stayed on the Imuran. Eventually I reduced the azathioprine and have actually stopped taking it altogether. I have been 8 months without medication. I had a minor flare up and have since been able to overcome it. In the past ten years I had skin cancer removed. I also had pneumonia a year ago. It took me four months to recover from pneumonia. I have had a lot of side effects coming off of the drug such as very bad headaches. But I am determined to stay off of this drug and hope that you are able to go into full remission with no prescription drugs at all!
This is great!
I was on Azathioprine for just 2 years and stopped suddenly when I found out I was pregnant- I took it alongside Allopurinol which hasn’t had enough research in pregnancy.
15 weeks in I feel better than ever. Long may it continue. The plan was to talk about going bk on it after I got to the second trimester and then stop again at the third trimester. But because I feel so great I’m continuing off it. My hope is to continue staying off it tthrough my pregnancy and while feeding….or perhaos even beyond. I was luckily because I had hardly any side effects on it. But still wasn’t great knowing i was taking something that’s a carcinogen.
Hi, great article,
I have been on azathioprine for UC 24 years now, non stop. My current dose is 200mg daily and I feel like crap. I’m exhausted all the time, I ache and suffer other side effects as described in these replies.
I stopped the drug today. I have a bit of a headache but feel a little excited to see what happens to be honest. I was told that I’d be taking them for the rest of my life, doctors over two decades have promised me that diet has no effect on my disease and I’m finally at the stage where I’m prepared to go it alone, listen to my body and see what happens, I”m only 47 and feel twice that age.
Wish me luck people x
I weaned off imuran 2 mos ago. Been on it 7 yrs for scleroderma and pulmonary fibrosis (mild). Got tired of being fatigued all the time. I actually feel great!! I feel half my age (I’m 58) and have found my energy returning!! I go mountain biking 5 days a week. Can’t wait to tell the rheumatologist. I quit sugar, dairy, red meat, any alcohol save for occasional white wine and I take vitamin D. I think it’s a diet related healing. Don’t underestimate the diet. Good luck.
For about 6 and a half years was on a combo of Remicade infusions and previously Imuran for Crohn’s so they were taken together I’m positive that the Remicade(and possibly the addition of Imuran) triggered a bout of Shingles which has resulted in post herpetic neuralgia which is pretty much gone though with morning itching in the eye that it affected. Then about seven months back, I got cellulitis in the right arm requiring seven days of antibiotics administered in the local hospital followed by about seven more when at home(which like the hospital was done via IV). I was supposed to resume the Remicade but chose not to and the Crohn’s did not relapse. And then maybe a few weeks ago pretty much stopped the Imuran after a gradual reduction and again no relapse though my GI doc wants me to return at a 100 mg./ day dose based on a recent blood test. I then emailed her to try to justify that being I’m in remission I don’t see a need to though I’m apparently one of the lucky ones who never had side effects from the Imuran. . It might just be my age(70) because Crohn’s flares as often as tend to burn themselves out based on what a previous gastroenterologist told me. If it did return then yes, I’d return to taking the Imuran as needed.
I have been advised to stop taking the azathioprine by my gastro. Just stop. After 10 years. Is this right?
What an eye opener to all side effects I have experienced in my body since being in this drug for over 10 years. Doctors never wanted me to reduce or drop. I started to reducing it myself over the last year. Thanks for this article. I’m going off it now for good.
I am currently tapering off Aza over the next 3 months (consultant said l could stop immediately if l wanted but l reckoned that was a bad idea🤔) after taking it for 2.5years for Autoimmune Hepatitis. Terrible joint and muscle pains as you described when on 100mg plus dipping neutrophils. GP agreed to reduce to 75mg 9 months ago and aches were much less. I obviously hope my LFTs behave when off meds totally but as l believe, and as a research nurse l have researched my hypothesis, that MY trigger which kicked off my AIH is tonic water (can’t metabolise quinine due to a defective metabolic pathway gene), that keeping tonic out of my diet will stave off a flare. Most of the medics l have encountered on my journey dismiss my theory outright except for the geneticist and as everyone’s genome is unique, it’s perfectly possible. Thank you for posting this piece – l have found it very interesting 👍
Hi there. I was wondering if you are still in remission after coming off AZA? I too was diagnosed with AIH in 2022 and my LFT came down really fast with prednisone and while on AZA continued to come down and stay down. I would like to get off it bc I have so much joint pain and muscle pain.
I came across your article two years ago when researching the risk of relapse if I came off azathioprine. I was on it to treat severe ulcerative colitis. I was on it for 7 years, (150mg dropped to 75mg after 5 years as blood work showed toxic). My consultant told me there were risks to be on azathioprine for more than 4 years and asked me what I wanted to do but suggested I should stay on them as they might not get me back into remission if I relapsed. I came off the medication and have been symptom free for nearly two years. Thank you for your post and highlighting the research.
Hi Jo, did you taper off the Aza? I only take 25mg daily but would like to stop as I’ve been on it a little over 3 years now, wondering if I should only take it every other day, then every 3 days, gradually reducing
I have been diagnosed with ulcerative colitis for over 24years having been ill with it for too many years before that. I have been taking azathioprine for approx 15 years and have never felt better.
My GP phoned me 2 days ago and told me to stop taking it straight away – I am assuming this is because of side effects – which because I have been so well I did not consider much.
So yesterday I did not take it and during the evening my guts were incredibly bad. This morning I took 1 tablet as I was going for my flu jab and needed to settle things down a bit this afternoon I feel very tired and generally unwell – reading these posts I feel there is hope at the end of this and I will feel better – any suggestions/advice very welcome
I came off azathioprine in March, 2019. After 2 1/2 months of flu like symptoms, I developed a large left lung abscess that collapsed the lung and had me
In the hospital for a week. I’ve been left with moderate Atalectasis from the scarring. Consensus was that that azathioprine certainly contributed to the infection.
I had been on the drug since 1998 for Crohns Disease. I’ve been mostly in remission for over 5 years. I certainly feel safer off the drug, and I think I feel better. I have though, been diagnosed with a macrocytic anemia and some kind of infection that keeps me with an elevated white count and low grade fevers. I’ve been wondering if the azathioprine has anything to do with this new state of affairs. It kept me chronically ill for over 10 years, (taking an immune modulator when you have a kid is definitely not for sissies). My docs seem to be flummoxed. And I have to wonder if the azathioprine is still messing with me.
Can you quit azathiaprine cold turkey? I’ve been taking 150mg for almost 20 years. I see that I’ve had or have a lot of the side effects.
I was diagnosed with Crohn’s about 15 years ago and have been on Aza almost the entire time. I stopped once about 7 years ago and had a flare and was put back on it. I’m trying again to go without as I’ve been in remission almost the entire 7 years. My GI gave the risks vs benefits speech but if I don’t have to have it, the risk isn’t justified. So, we’ll see. I’m keeping a close eye on my body and any symptoms. Here’s hoping I don’t need it!
I’m glad to have found this article. I recently was encouraged by my doctor to stop taking azathioprine after 10+ years on it for UC. So far I’m a week and a half off of it and I’m feeling somewhat puny, but relieved to be off of it. Has anyone has experience with not feeling great initially while the body adjusts to being off of the azathioprine?
Hi Laura- I’m thinking of coming off , mainly due to a cancer diagnosis ( gone now) but taking aza in my mind the main contributor – 17 years taking it with UC. Interested to know how people feel when ‘coming down’ off this stuff …. as want to ‘ride it out’ if I can …
Thank you for this article and for everyone‘s comments. So many horrible side effects on it for such a short period of time and I’m ready to be done w Aza. Hair loss, weight gain, swollen feet, black outs after not much alcohol, memory loss, confusion and loss of words or names, joint pain, muscle aches, constant colds, fever blisters, and more! Im inspired and empowered to stop. Take it for Uc but also take liada. I am in remission thanks to this drug but damn the side effects suck!!! With coronavirus creeping in the US I’m ready to get my immune system back!
I have been taking aza for U.C for 6 months, 150mg and want to come off it due to side effects. Had a course of prednisolone along side the 150mg for the last 6 weeks, finished the course last week. I was on the meselazine for the last 20 years prior to the aza. I am trying a diet change of no dairy, no alcohol, caffeine free, potatoes and red meat. I am also taking smoothies drinks with avocado, spinach, banana , blueberries, organic oats and almond milk. Small meals little an often to manage this condition. Will see how this goes with a reduced dose every week with a view to come off them with a mind over matter attitude to this chronic illness.
I’ve been on it for nearly 8 years and all has been great. No Crohn’s relapse or arthritis. I’m thinking of stopping because of Coronavirus. Anybody got any advice.
I have just landed in this article as i have taken the decision to stop Imuran after nearly 8 years for my UC when i heard that the coronavirus will be of a greater impact to people with low immune system. But i had my doubts as my doctor and all the medical websites advice not to stop, so i was researching tonight again when i found this article. I have stopped 9 days ago and to be honest i don’t feel anything wrong is happening in my body. On the opposite, i am starting to feel less fatigued and waking up more energetic in the morning. i am really glad that i read this article and will try to update my comment soon maybe this will be of help.
I’ve gone off AZ cold turkey about a week ago. i suffer from Crohns. Corona was the decider. I was really worried about the side-effects of coming off and whether it would be affected again if I needed it down the track. I’ve got terrible heel and foot pain as well as problem with one of my hands and my forearm. I feel like I’m falling apart. No encouragement at all from doctors to improve your diet or to do anything but stay on drugs. i’m certain stress is it really bad. I’m going to try everything in my power to approach this on a holistic basis without drugs.
How are you doing now?
I stopped three days ago. I’m so itchy. All over. My feet feel cold and clammy and wierd.
Just felt like maybe the med was why I was feeling so terrible all the time. Plus my hair falling out.
I was in it for Crohns and RA.
Guess there’s a lot of us looking at coming off immunosuppressants right now. I’ve also stopped taking Azathioprine just last week, after 3 years of 125mg a day. I’ve been lucky, in that aza gave me no noticeable side effects, and my UC has been under control since I started taking it. Previous to the aza, I had 2 or 3 courses of Prednisone over the past 10 years or so to treat flares, and they did the trick without major side effects (except for feeling like I’d had a small dose of amphetamine). I’m now on day 7 of aza withdrawal, and have been very tired and getting headaches, not sure if that’s the cold turkey or the stress. I’m in UK and currently have to stay indoors, and 2 meters from my wife and son for 12 weeks as I’m officially ‘extremely vulnerable’ to Covid 19. On balance I’d rather deal with a flare up than Coronavirus. Anyone got reliable data on how long it takes immune system to return to normal after you stop aza? Best of luck all, and stay safe.
I have been off Aza for nearly 4 weeks, 150mg daily. It so far has not affected me and phycologicaly I feel better. I have stopped alcohol, caffeine and dairy alongside this. I have read it could take up to 12 weeks to be completely out of your system.
Reading through your message and your med history sounds like my own. I am on aza for nearly 9 years now with no major side effects but would love to try going off it. Just wondering how you got on with withdrawing and if you are still off it or on something else or hopefully nothing else. Thanks.
Fellow IBD suffers, please don’t make a hasty decision to withdraw your AZA without discussing with your healthcare provider. I know COVID-19 is scary for us. I myself am a registered nurse who has taken AZA for over decade and will no doubt eventually be exposed. It is not a benign medication, but it is relatively safe, much safer than steroids. A flare requires steroids to treat, and that is the last thing you want to be taking during a viral epidemic. Also the article the author refers to to justify his reasoning is just one of many on the subject. More specifically the study he seems to have cherry picked is the one least demonstrative of AZA’s long term benefits. Risk of relapse is reduced by AZA by up to 50%. Please talk to your healthcare provider before making any medical decisions and keep in mind that the immune related effects of AZA likely take 8-12 weeks to return to baseline. See this article for a good overview of the literature: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746338/
Thanks for article. I’ve been taking Asa (Imuran) for nearly 17 years. Ulcerative colitis with no real flairs… Recently found cancer in the anus (of all places🤣) anyway gone now but my consultant recommending getting off aza… I want to taper down as been on it for so long …..
I have been off Azathioprine for 4 weeks, still no major concerns apart from stomach gurgling more in the last few days. I have lost some weight but that could be down to my strictly regime of no dairy. Red meat, alcohol, caffeine and white bread to name a few. I stopped due the Covid-19 outbreak. My GP will probably not advise this course but I felt I had to try something.
Been on 150mg Azathioprine for 20 years for UC without any real problems other than the odd flare about 1 every 3 or 4 years, never been hospitalized prednisolone always got it under control, however I had to have a Basal cell carcinoma removed last September and a Squamous cell carcinoma removed 5 weeks ago, both under local anesthetic and both successfully, luckily i dont need any more treatment. I was by advised my gastroenterology specialist nurse to stop taking the Azathioprine immediately, which I did been off just under 5 weeks and I have been fine, so fingers crossed.
My son is 26 been on AZA 100mg for 10 yrs for chrones, only 2 flares (one was 4 yrs ago & one a year ago) has a lot of skin moles & thankfully benign biopsies. He now has a new GI doc now who due to lymphoma etc cancer risks , wants to switch him to Humira , does that make sense? It’s got the same risks doesn’t it? Or do all these drugs just get risky after many years of use respectively. I want him to go off all & see what happens, maybe stay in remission & try holistic approach, but I’m afraid of a flare & it would be my fault for telling him to stop taking immunos. What to do next?
Very difficult to know – it helps to have a doctor you can trust – someone who knows your son’s condition well
Hi, I m suffering from UC for the last 14 years and have been on medicines. There have been very ups and downs. Now in addition to other medicines I m taking Azaithioprine for the last 7 years. Now for the last one and half year I am in remission and stopped Aza for the last two months against the advice of my Doctor. Now I feel fine myself in all respects.pl.advise.me what should I do for my future course of action. Thanx.
I’ve been on Az 150mg for ulcerative colitis for just over five years. No flare up in this time. I was diagnosed with appendix cancer in February of this year. After asking my consultant he has agreed i can stop the az immediately. The side effects i had (which I think were caused by az) blood blisters in my mouth, hair loss, general fatigue.
It helped my uc but I think everyone needs to be aware of the possible dangers. Thanks for writing the article.
Thank you for this article. I have been taking monthly Cimzia injections and Azathioprine 50mg daily for Crohn’s for 5 years now. My Crohn’s has been in remission for 4 years but I was told I would need to continue my medication “for life”. I’m surprised nobody has brought up the anemia associated with Azathioprine. As part of monitoring, I have a full blood panel done every 90 days and for years my MCV and MCH values have been high. My dr told me Azathioprine does that and he just dismissed it. But since then I’ve done my own research and this is called megaloblastic anemia – look it up, “azathioprine induced megaloblastic anemia”. The symptoms I have been having are actually from the anemia: fatigue, shortness of breath, tongue issues, feeling cold, diarrhea, elevated heart rate. Since refilling my last prescription I have started taking Az every other day and after that I will not refill the Rx. I hope my blood goes back to normal soon.
Great to find this information and group! I have been taking AZA for about 2 1/2 years 5o mg for Auto Immune Hepatitis. My liver values came down about 6 months after taking the drug and I just requested my doctor to take me off! He told me to tapper the drug and take one every other day for one month and then take one every two days for a month and then stop. I then will go for blood test and visit.
I will be 70 shortly and basically well fit. I tracked my blood results over the period and gave him my liver values during that time. I do not like the idea of staying on the drug either.
Noticed more moles and skin issues.
Great write up! I have been Azathioprine for 4 years now, I am being dismissed by the specialist for my eager and passion (they see it as rebellious) to want to discontinue the drug.
I take it for a disease called Myasthenia Gravis. I have only just conquered discontinuing prednisolone after 4 years (3 weeks ago)
I am not getting the help and support needed by the specialist to the point of them now not answering my emails and cancelling my appointments.
Could anyone advise me how to wean off 100 mgs of Azathioprine please?
I thought I best leave it a few months to help my body adjust after long term drug abuse from prednisolone
I am 30 and have had UC since 18 years old and been taking Azathioprine ever since. I caught up with my consultant yesterday and queried randomly whether I should still be on it. He told me to come off it immediately as I’m still young and there’s obvious risks of skin cancer as well as other side effects.
I think the reason I’ve never queried it is because aside from headaches (which may not be down to Aza) as well as fatigue, I’ve coped okay.
I have to say I am very worried about coming off this drug after I’ve been 95% okay in the last 12 years. I’ve had the odd relapse but sorted quickly with a week or two of steroids.
My consultant said there’s obviously a chance of a flare up but if I do have a flare up I’ll go straight on some steroids and then an injection immunosuppressant called Humira (and never go back on Azathioprine again).
Calling my consultant could be the best thing I ever did as it could save me from things such as skin cancer. Time will tell.
Thanks everyone for your comments on here. It’s helped me become a lot more confident about coming off this drug.
I’ve been a UC patient for 20+ years. Twice, I have stopped taking Aza. The first time was by doctors advice. About 9 months of stopping it, symptoms started to come back. So back to Aza.
The second time I stopped taking it on my own as I went on Keto diet to see if it will help my UC stay in remission. I had tremendous benefits from the diet but right about now in April 2022, 9 months of stopping Aza, symptoms starting to creep up. So back to Aza.
For myself, it seems about 9 months is when I loose the benefits of Aza if I stop taking it. Once controlled, my plan is to try taking it every other day.
While on Aza, I did not have any major side effects but I know these chemicals are not good for you. I try best to have a healthy diet along side to try and counter some of these side effects. Right now, the focus is to get back on track. Fingers crossed.
I am 50 and was diagnosed UC (Grade IV) in 2011 and have been using 100mg azathioprine since then. I had to add dexamethasone twice for brief periods during that time… three colonoscopies in total and two complete blood panels every six months.
I have other chronic conditions but I don’t think I have ever suffered from any side effects of Imuran. I only had to supplement it with Vitamin-D because of my avoidance to direct sun exposure at all costs which was assumed to be to cause of the deficiency I developed after the fourth year.
I quit cold Turkey this July, after just three months short of eleven years, and had no withdrawal symptoms whatsoever. Almost fourth month and still no flare-up either.
So grateful for this article. I’ve been on 150mg Imuran for 3 years. Stopped 4 weeks ago while having COVID. Haven’t felt this well since starting in. I had assumed the fatigue and joint pain was from autoimmune diseases but both have improved considerably over the last couple of weeks. Thankyou