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Coming off azathioprine (imuram) - possible related problems

C

CronoMush

I had wanted to post this in Ask the Experts, but it seems I do not have that privilege, so I have posted it here instead.

A year ago when I went for a follow up my consultant suggested that since I had been on Azathioprine for 5 years, and since my condition was relatively stable - in remission, it was time for me to come off the drug and that in a years time "we should gradually take you off it".

A year later - on the 20th May - I was asket to stop using the drug immediately. I was advised that I do not need to taper it off, just stop taking it. Being cautious I did taper it off over 3-4 weeks. Since then for most of the time I have felt run down. On and off I have get a 'thick head' and periods of dizzyness and weakness which make me worried about driving sometimes. I feel better for two or three days but quickly start feeling unwell again. I get tired very easily with only relatively moderate activity. For example a shopping trip will exhaust me. I'm Ok for a couple of hours in the morning but am shattered by the afternoon. The result is that over the past 6 - 8 weeks I have had significant time off work and have been in constant dilemma as to whether to go in or not. One key point is that my Crohns still appears to be in remission as I have not had any significant bowel symptoms since coming of the drug.

My GP suggests that the problem may be withdrawal from the drug - he even likened it to withdrawal from cocaine, heroin etc although perhaps not as severe - and explained it may take my body a while to adjust. Now, I was told when I went on it, that the drug it increases the risk of cancer (so I'm glad to be off it), but not I was not informed that it may be addictive - neither when I started taking it, nor when I was asked to come off it. I asked how long this adjustment would take and was told 'as long as it takes'.... He did take a standard blood test, followed by further tests on the thyroid, kidney and liver function but all of these came back normal - which, of course, is positive and confirms that there is nothing systemic going on, but it otherwise leaves the matter rather inconclusive. There was a suggestion that it could be viral, but most likely withdrawal.

So, I wanted to confirm - is Azathioprine (imuran) addictive? Have others experienced withdrawal symptoms when coming off it? If so, how long did it take for things to settle down?
 
nitty

nitty

I am still on Aza so I can't comment personally on what it's like to come off.

It would seem sensible to me to think that, as you have been on a drug that changes your blood profile, then coming off that drug will mean that your body has to readjust back to your 'normal' blood levels.

If it can take up to 3 months for Aza to take full effect, I would guess that it could take three months or so to return to normal due to the time it takes for your body to produce and replace blood cells.

This is only my personal thoughts, and someone better qualified here may be able to say whether it is complete tosh or not!!

I think I would have done the same as you in tapering off it.
 
Layla

Layla

I stopped aza twice cold turkey, the first time from a 150mg dose and had zero side effects. I had to stop because it gave me severe anaemia and my blood values increased pretty quickly after stopping.

Both times I was told to stop taking it, no taper, and because my HB improved fairly quickly, I felt a lot better off it than on. Neither GI ever mentioned anything about it being addictive or the possibility of withdrawal symptoms. Of course I wasn't on it as long as you, probably a few months both times.
 
Mr chicken

Mr chicken

Ds was on the sister drug 6-mp and had to stop it immediately cold turkey
He got tired and fatigue but also got abdominal pain /loss of appetite and increased bm from crohns being untreated within a week of stopping it.
Once he was placed on Pred and mtx things improved slightly.

What has the Ibd nurse/Gi said ???
 
Agent X20

Agent X20

Location
West Yorkshire, UK
I've started to come off aza after being on it for seven years. I'm tapering off over a period of a year, cutting the dose by 25mgs every three months. I've been doing this for six weeks and not felt any ill effects. I assumed that it takes months to get out of your system and the taper is slow slight that it will take a very long time to notice any difference.
I also spoke to a nurse with Crohns recently... he had to come off aza cold turkey for medical reasons and had suffered no ill effects as yet... although it was still within three months of quitting the drug.
 
C

CronoMush

So I'm getting the sense from the above comments that azathioprine should not be addictive nor should there be any problem with stopping it cold turkey. The consultant did warn me that there is a possibility that the Crohns may flare up again, which is understandable, but so far, that does not seem to have been the case.

Mr chicken, I did a little reading up on mercaptopurine (6-mp) as I have not encountered it before, and it seems to be a different drug so I'm not sure that one can make a direct comparison, but it is interesting to note that although you mention a return of Crohn's symptoms and fatigue which often go together. In my case though, I have been off azathioprine for nearly 2 months and do not seem to have developed any abdominal symptoms that would also explain the fatigue.
 
Catherine

Catherine

Moderator
My daughter has asymptomic Crohn's Disease. Stomach pain is not symptom for unless she is a flare for a long period.

Have there been any drop in hemoglobin or iron levels since stopping Aza?

Have you ever had a faecal calprotectin ran?
 
H

hawkeye

Moderator
Staff member
I stopped it after my surgery (was taking 150 mg/day) and did not notice any adverse effects.
 
B

Bunty

Location
UK
My IBD nurse told me that aza and 6mp are very similar drugs but that 6mp is usually tolerated better than aza by people who have difficulties with aza. It's something to do with how the two drugs are 'processed' by the liver, 6mp seems to kind of by pass that bit.
Or something like that...
If you put 'difference between 6mp and azathioprine' in your search engine, there's a lot of information about it.
Bunty x
 
C

CronoMush

Thanks Bunty. I did a search as you suggested and turned up some interesting info. Azathioprine is prodrug for mercaptopurine, which apparently means that it is in a form that when metabolised produces mercaptopurine. As your nurse said, one form is tollerated better than the other by some but they add up to the same thing.

Incidentally, does anyone on here know for how long can one safely stay on Azathioprine / Imuram / 6-mp on?
 
nitty

nitty

I'm 44. I've been on Aza for 3 years and, unless it stops working for me, I will probably be on it for life. I have to accept the risks, as the risks for me of stopping it are too great.
 
C

CronoMush

Well its been more than a month since I posted this and although my fatigue eventually eased but about a week after posting this I started with Diarrhea. Although this has now eased off, for the last 3 weeks I have been suffering IBS symptoms, basically a feeling of my insides being inflamed, a lot of bloating and loosing blood daily now for at least 2 weeks. The GP has given me some steroid cream to promote healing of the affected area but does not believe that it is a Crohn's flareup! The feeling of internal discomfort and inflammation won't go away though. I finally managed to get in touch with the IBD nurse at the gastro clinic and was advised that whether they re-introduce the Aza will depend on the result of blood tests and stool sample. I've also been advised that the bleeding is nothing to worry about as the body can easily tolerate the loss of a couple of tablespoonfuls every day. While I find this re-assuring to a certain degree and am not overly anxious over it, I am not entirely convinced that I should just ignore it. The clinic is supposed to have access to the results of the blood test today, but although I've tried calling several times the number is engaged....
 
nitty

nitty

I'm sorry you are having problems again. I am in a similar situation where I had hoped to stop mesalazine as everything was so well and I was staying on Aza, but now my problems are back again. Hopefully you will soon find the best way to get back on track.

What this experience has done for me, however, is to make me realise that I have a condition that needs medication to keep me well, and that I can now dismiss any doubts about whether I really need to be taking these drugs - I do, and now I have to just accept that and get on with it, and consider myself pretty lucky so far.

I hope you feel better soon.
 
C

CronoMush

Managed to get in touch with the clinic. My hemoglobin is on the low side of normal but apparently nothing to worry about at the moment. Other markers such as CRP are also normal. I have been advised to wait another week to 10 days for the fecal calprotectin results so it looks like no answers yet.
 
C

CronoMush

Saw my GP today. He confirmed that all of the blood test markers for Crohn's were normal so he is not yet convinced that this is a Crohn's issue and has hinted that there could be something else going on. We are still waiting for the results of the Calprotectin test. In the meantime, my blood loss is continuing and my count has dropped from 14.6 to 12.4. He has scheduled another blood test in 2 weeks time when hopefully the result of the Calprotectin test will be back as well. In the meantime that leaves me a bit in limbo, but at least I suppose things are being monitored.
 
C

CronoMush

Its now been over two months since I started this thread and I am now getting very concerned. This has been dragging on for far too long and I have just spent 3 days in hospital! I'm now back home, despite consultations with my GP, nothing has been resolved although he has confirmed elevated calprotectin levels (800) which has confirmed active IBD. Since my haemoglobin count has dropped further, at least since the middle of last week I have been on iron tablets. My stomach is still regularly bloated and uncomfortable, I am short of breath on even slight exertion. I now also seem to be getting the odd sore throat especially at night and I am still passing blood pretty much every day. The cause of the latter is unknown and PR examination reveals nothing obvious. A sigmoidoscopy as part of a routine bowel cancer screening (due to my reaching a certain age) was completely clear and also showed no obvious signs of Crohn's or reasons for the bleed at least for that part of the bowel.

I had been gradually getting more and more short of breath and can now only walk short distances (a few yards) at a very steady pace before my chest gets tight and I get breathless. I sometimes felt my heart racing. After one particular episode on Sunday we decided to call the NHS advice line on 111. I was advised to go to the A&E at my local hospital. While admitted there, investigations showed that my haemoglobin is on the low side (11.0) but this is not regarded as serious enough to cause the shortage of breath I was experiencing as I am apparently oxygenating well enough with readings between 98 and 100%! Doctors happily ruled out any heart problem or pulmonary embolism. They also ruled out asthma and given my history they also looked for pulmonary Sarcoidosis although again, nothing showed up on an X-Ray or CT scan. Finally I had a echocardiogram, which was also normal.

Since I was still demonstrably getting short of breath on short walks (one test had me pacing up and down the ward for a couple of minutes) I was referred to a respiratory clinic for further examination including spirometry. In addition, they also contacted gastroenterology in order to expedite getting the Crohn's treated.

While I am happy that they have ruled out anything life-threatening for now, I am rather frustrated because it usually takes weeks to get appointments at clinics and you usually have to see the consultant first before waiting another few weeks for any tests.

Meanwhile my situation continues to slowly deteriorate. My haemoglobin count is still slowly dropping. The first test showed it at 14.6. Subsequent tests were 12.4, 11.8 and last Sunday 11.0. My ferritin level two weeks ago was 12. The last two readings were taken 9 days apart and i had been on iron tablets (2 per day, 305mg) for about 3 days by then. The only other thing that I noted was that on the 3rd day while at the hospital, medical staff while discussing my case mentioned that my BP had been on the low side since I had been there. I understand that this is not normally considered an issue, except that it has been noted before by various medical staff taking my obs.

Perhaps the iron will help with slowing down the reducing haemoglobin count, but the long term solution appears to be to sort out the the Crohn's flare up. I am grateful for the examinations that were performed during my hospital stay, but I still feel rather in limbo!
 
S

Stef2016

Hi CronoMush
How did everything turn out for you in the end?

I have been on Azathrioprine for about 8 years and off it foe about 4 weeks. Lot more tired than usual, more low energy and less motivated to exercise. Wondering if you found anyone else with side effects coming off the medication.
Thanks
 
ronroush7

ronroush7

Stef2016 said:
Hi CronoMush
How did everything turn out for you in the end?

I have been on Azathrioprine for about 8 years and off it foe about 4 weeks. Lot more tired than usual, more low energy and less motivated to exercise. Wondering if you found anyone else with side effects coming off the medication.
Thanks
Click to expand...
Have you had your blood checked lately.
 
M

Mamckenzie1

CronoMush said:
Its now been over two months since I started this thread and I am now getting very concerned. This has been dragging on for far too long and I have just spent 3 days in hospital! I'm now back home, despite consultations with my GP, nothing has been resolved although he has confirmed elevated calprotectin levels (800) which has confirmed active IBD. Since my haemoglobin count has dropped further, at least since the middle of last week I have been on iron tablets. My stomach is still regularly bloated and uncomfortable, I am short of breath on even slight exertion. I now also seem to be getting the odd sore throat especially at night and I am still passing blood pretty much every day. The cause of the latter is unknown and PR examination reveals nothing obvious. A sigmoidoscopy as part of a routine bowel cancer screening (due to my reaching a certain age) was completely clear and also showed no obvious signs of Crohn's or reasons for the bleed at least for that part of the bowel.

I had been gradually getting more and more short of breath and can now only walk short distances (a few yards) at a very steady pace before my chest gets tight and I get breathless. I sometimes felt my heart racing. After one particular episode on Sunday we decided to call the NHS advice line on 111. I was advised to go to the A&E at my local hospital. While admitted there, investigations showed that my haemoglobin is on the low side (11.0) but this is not regarded as serious enough to cause the shortage of breath I was experiencing as I am apparently oxygenating well enough with readings between 98 and 100%! Doctors happily ruled out any heart problem or pulmonary embolism. They also ruled out asthma and given my history they also looked for pulmonary Sarcoidosis although again, nothing showed up on an X-Ray or CT scan. Finally I had a echocardiogram, which was also normal.

Since I was still demonstrably getting short of breath on short walks (one test had me pacing up and down the ward for a couple of minutes) I was referred to a respiratory clinic for further examination including spirometry. In addition, they also contacted gastroenterology in order to expedite getting the Crohn's treated.

While I am happy that they have ruled out anything life-threatening for now, I am rather frustrated because it usually takes weeks to get appointments at clinics and you usually have to see the consultant first before waiting another few weeks for any tests.

Meanwhile my situation continues to slowly deteriorate. My haemoglobin count is still slowly dropping. The first test showed it at 14.6. Subsequent tests were 12.4, 11.8 and last Sunday 11.0. My ferritin level two weeks ago was 12. The last two readings were taken 9 days apart and i had been on iron tablets (2 per day, 305mg) for about 3 days by then. The only other thing that I noted was that on the 3rd day while at the hospital, medical staff while discussing my case mentioned that my BP had been on the low side since I had been there. I understand that this is not normally considered an issue, except that it has been noted before by various medical staff taking my obs.

Perhaps the iron will help with slowing down the reducing haemoglobin count, but the long term solution appears to be to sort out the the Crohn's flare up. I am grateful for the examinations that were performed during my hospital stay, but I still feel rather in limbo!
Click to expand...
I know you posted this a few years ago but I'm ever to know if you got better?
I was diagnosed with Pan Colitis in September last year and was hospitalized for 12 Days, despite repeated trips to my GP they did not take it seriously so I ended up losing 12kgs in 3 weeks, my CRP was 96 when I was admitted. I was put on 100mg of intravenous steroids until I started to get better, I was discharged then put on 40mg of pred for two months and tapered off after that. I started Azathioprine 125mg a day once off the pred along with 4800mg of Mezavant but soon my liver started to become affected as I do not have the enzyme which helps metabolize azathioprine, I got a severe pain in my left side, shortness of breath, my hair was falling out in handfuls ever day, so I was told to reduce to 25mg per day with an added 100mg of allopurinol to help metabolize the allopurinol.

Five weeks ago I started getting a pain in my left side, pain under the left side under my rib, shortness of breath, a cough, agony when taking a deep breath. I contacted IBD nurses who told me to do bloods they said things were elevated but nothing to be concerned about. However back at home for me very normal things were becoming very hard to do, ontop of all the agonizing pain I was terribly fatigued. So I took off work and went to A+E where the on call doctor had no idea about the meds or the condition and offered me gaviscon, I asked her to contact the specialist and see if they could check my bloods, I was told things were raised and I should be admitted but there was no bed so I was told to stop azathioprine and given codeine and sent home.
I have since been back to A+E twice, seen the specialist because I demanded to, he doesn't know what's causing the pain.

Since stopping I have had two days of bleeding and mucus which stopped, I wake up 5hours after falling asleep in severe pain, the pain starts in my left side and spreads across to my chest and I lay in agony for up to two hours before I can get up and walk around.

I just wish I knew what it was and I'm solely convinced it's the azathioprine, do not take the drug and put complete trust in your Specialist because I'm pretty sure none of them are really looking at things as seriously as they should.
 
C

CronoMush

Mamckenzie1, it sounds like you are having an absolute nightmare and I am really sorry to hear that. I know what it is like to be up all night and in considerable pain so I can sympathize at least to a degree, although naturally each circumstance is unique to the individual and only you truly know what you are going through, but at least you are not alone. There are other sufferers on here who have been there.

In answer to you question regarding whether I got better, I basically had a big flareup and if memory serves correctly B12 deficiency. It took several months before I was eventually put back on Azathiorpine and things stabilised again, during which I was off work for several weeks. However, this year I am having problems despite the Azathiorpine. It seems that I can no longer tolerate high fibre foods, such as vegetables with skin like sweetcorn and peas. I have been asked to keep to a low fibre diet and avoid such vegetables. In addition my Azathioprine dose is upped from 50mg to 75mg. This seems to have kept things reasonable comfortable for the time being. In the last 3-5 months I have had an 8 week course of prednisolone which didn't seem to have much effect, an endoscopy after which I was ill for a week, and an MRI where I had an allergic reaction to the dye they used! Since these were clear and do not explain my high Calprotectin count I am scheduled for a capsule endoscopy next week. I have also lost a few pounds in weight, but not quite as much as it seems you have. At least my specialist seems to be getting the tests done.

When I started on Azathioprine (which was after I came out in a severe rash and it was found that I am allergic to Mesalazine based medications, e.g. Asacol, Pentasa) I was informed about the possibility of liver problems although fortunately I do not seem to have be affected by them. Although my dose of Azathioprine has been increased, it is apparently still relatively low. I have found the IBD nurses generally sympathetic and helpful although sometimes there is only so much they can do and the NHS system still takes its time.

Gaviscon is usually given to deal with any possible inflammation of the esophagus and sphincter (entry to the stomach) or reflux (GORD). Perhaps the doctor on duty thought that this might be the source of your chest pain.

If you have seen your specialist (and I presume you do mean your gastroenterology clinic specialist) and s/he cannot explain the cause then I presume they have scheduled further tests or at least a clinic appointment for a review?

In the meantime since things are that bad ("up to two hours before I can get up and walk around"?), if things are still getting worse then I would not hesitate to go to A&E again or see whether your GP can push for getting you checked over properly. The reason why I am getting seen to now is in no small measure to my GP getting on the phone to the clinic to get things moving.

I do hope you can get some relief and that things do improve for you soon though.
 
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