Treatment using Azathioprine

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Victory

Joined
Jul 18, 2009
Messages
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Hi, I found this forum by chance…

Several questions that I would like to ask:

I am diagnosed with Crohn’s. Currently taking Pentasa 250mg x 4 tablets, twice each day.

I got to visit the consultant every 2 months and a full blood count is then done. My Hb level reading is mostly around 11+. I have been prescribed iron tablets. The comments from the consultant are that there might still be some activity inside my small bowel as my Hb level should increase since I am on iron tablets as well as on Pentasa. But this is not the case.

Now, my consultant suggested an alternative treatment using azathioprine. I have been finding information on the net and there might be serious side effects dealing with the liver, lymph nodes and such. This really sets me thinking if I should go ahead with this medicine. I understand from my consultant that there will be regular blood tests on the white blood cells, ALT markers, inflammatory markers as well as creatinine levels. The minimum time to be on azathioprine would be around 5 yrs or more depending on individual.

What I want to ask is:

1) For those taking azathioprine for 1 to 2 yrs, what are the side effects that you guys normally face?

2) Anyone has totally stopped taking azathioprine after a very long period of time. Any side effects you face? Or is there a flare up after stopping it?

3) What should be the average white blood cell, inflammatory markers, ALT markers and creatinine markers be when you are on Pentasa?

4) Is it true that you will be more vulnerable to infections such as colds, sore throats and such?

Thanks for the feedback
 
Hi Victory, welcome to the forum. I've only been on azathioprine for 9 months, but I haven't noticed any side effects. I know that a few girls on here had troublesome hairloss, and even stopped taking it because of it I think. I am on Remicade and was on prednisone - all 3 immunomodulators/immunosuppresants at the same time, and noticed no weakend immune system yet. I got a few colds over the winter, but nothing more than normal. I had a really sore throat for a few weeks, but there is no telling if it was just another cold, or if it was worse due to the meds.

My doc has me get bloodwork every other month to check liver function.
 
Hey I'm on it again (going on about 3 weeks now) but in the past I was on it for 8 or 9 months.

Previously I did experience hairloss, this time I'm not sure because it does take about 2-3 months to kick in.

I have one blood test a week for the first month, one every other week for another month and then every other month after that.

I haven't really noticed many colds or flus... and I've been immunosuppressed since Nov. 2008. I too have a sore throat and I cough some... but nothing that unmanagable.

Welcome to the forum!
 
Well, I never got sick until I started immunomodulators in general, and have been on Remicade, Cimzia previously, both with Azathioprine, and have been on Azathioprine the longest (still on it). I started it Nov 16 of 2007, so over 18 months now, and currently my dose is a whopping 275 mg, but that's the strongest suppression my system is getting, no infusion drugs or TNF alpha inhibitors, so maybe that's a tradeoff...?? Your GI (consultant over there) should be monitoring blood tests, if they give you Azathioprine and don't have blood analyzed at all, something's amiss.

My blood tests are buried somewhere, so I'm sorry I can't give target ranges/markers for myself, but yes, you are more susceptible to infection/pathogens, so be careful. Oddly, certain things that are horrendous to experience while inflicted are in theory, not so bad on Aza, because sometimes the actual suffering is induced via the immune systems response. Take the Swine Flu/N1H1, the worst cases are actually from the immune response (an over-reaction, almost) when the body responds to the intrusion. With Aza, on paper (and arguably in reality), you will suffer less of a reaction as the immune system is blunted. On the other hand, you're more likely to contract the virus in the first place. Pluses and minuses, so it is...

I've heard of hair loss and fatigue as well as lymphoma issues, but my symptomology and medication roller coaster hasn't allowed me to attribute a whole lot to one factor or another, I got thinning hair, but prednisone probably did that. I have been exhausted for a while, but the disease can do that too...
 
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First welcome! We get this question a lot here from first time posters =) The side effects listed are done because they have to list them even if it happens in a small group of people.

I was on AZA for 3 months before being taken off it. I didn't have problems with liver function or anything else like that but I did notice I got quite a bit sicker than normal and also was massively fatigued but that was the case with Humira was well and it's just a small sample.

I would say you should give it a shot and get the weekly/bi-weekly bloodwork to make sure your body is handling it ok. There are a couple of folks Kev and I can't recall who else right now who did get the pancreatitis issues that are listed on the web and had to stop.

Once I stopped the fatigue and cold like symptoms went away. It's completely different for each person but if Pentasa doesn't work then it's the next logical step. You have to always weigh the potential benefits against the potential side effects.
 
Here is my experience with Aza:

Started on it with 150 mg, after about 9 months I started having episodes of vomitting an nausea; blood tests showed elevated Bilirubin, which indicated liver toxicity. Dose decrease to 50 mg, liver tests normal again, stayed on it for about 4 years; Stopped about a month ago as I'm planning to have children, and no side effects till now.

If you feel you are on remission with Pentasa alone, then don't go with Aza. Also you might try other safer options before taking Aza, like diet, supplements or LDN therapy. Good Luck
 
Been on 6-mp since March (similar to aza) and no side effects. Only on 50mg as my liver can't take higher dose.
 
Actually I am not really keen on taking azathioprine. Just that my GI mentions that my blood count or rather Hb level is not rising despite the pentasa means that there are still some activities inside my body. Just that I have not feel it yet.

I feel nausea after taking the iron tablets. So got to resort to other supplements that are rich in iron instead.

That really makes me worried quite a bit.

I definitely don't want to rush to hospital in the middle of the night for an emergency surgery.
 
I've been on 150mg of Azathioprine for at least 5 years now. I forget the exact time.

I've never had any serious problems. Just the odd minor infection every now and then.
 
Hiya
I have been on Azathioprine for almost a year now. When i first read the side effects i got very worried. It upset me that I had to take a medicine that could harm me so much to make me better. But a year on I have no serious problems with it and it is fine. :)
I originally started on a dose of 100mg a day. But I started feeling sick and went off my food. I lost about a stone. But aparently its because i have a low amount of a cirtian enzyme. So now i am on 50mg and everything is fine.
I havnt had problems of getting bad colds with low immunity, but i do seem to get every cold I come into contact with!
I have my blood tests every other month now. At first it was every other week. It isnt as scary when u know they are keeping an eye on you. :)
xxx
 
Unfortunately I had to stop azathioprine after about 6 months or so because it was determined it really wasn't working for me, I was on 100mg daily, I was getting very little relief from my symptoms (I am moving on Infliximab as soon as it can be scheduled). I was okay on it for a little while but then began experiencing really bad nausea and hairloss, I lost about 70% of the hair I had. I mean you could describe that really as nothing too major when you consider that my blood test results showed no really dangerous changes. My Bilirubin was elevated but I have Gilbert's apparently which means I was born with it that way. The hairloss was probably the worst thing for me as it did knock my self esteem.

I did catch colds and bugs more easily and felt run down, but I was told to expect this and what to do in situations where it may have been anything bacterial.

If you don't feel comfortable taking azathioprine talk to your consultant about other options, obviously it is a very powerful drug and not something to rush into taking. But really if it might help it is something to think about, you are monitored so closely that if at any point doctors thought azathioprine was compromising your wellbeing they'd take you off it straight away.
 
Hi guys, another question:

Can I check how frequent are the blood tests?

Is it every week initially for a period of time, followed by every month and subsequently every 3 months?

For the initial times whereby you need to go for blood tests everyweek, how do you get an execuse from your boss or school to go off for a couple or hours for the test?

Rgds
 
Victory said:
For the initial times whereby you need to go for blood tests everyweek, how do you get an execuse from your boss or school to go off for a couple or hours for the test?
Click to expand...
The blood labs have hours that allow me to go either before or after work. If you don't have an option like that, it should be no different than a medical appointment for your work or school. Though it usually only takes 5 minutes if there is no wait.
 
I have been on AZA for over a year now. I have had no side effects from it. I started taking it alone with Pentasa but this combination did not work so I was put on Remicade and continued the AZA. The AZA is suppose to help prevent your body from developing antibodies to the Remicade and so far it has worked. I have never really been one to get colds or the flu and was worried that I would get sick because these drugs suppress the immune system but I have not had so much as a cough yet (knock on wood). AZA and Remicade has relieved 90% of my symptoms. The 10% that is not helping with is the RA but I can deal with that because I feel so much better because of it.
 
I started Aza the beginning of this week. Blood tests are weekly for the first 2 months, then monthly for 2 months and finally every 3 months.

As others have said; it's just another medical appointment. If you can schedule it out of work time then do, otherwise your employer should allow you to go to them.
 
I've been on AZA for over a year now. Not noticed any side effects, apart from increased paranoia about catching infections, but in reality I've had less... probably because I'm a lot more careful about things now, like using hand gel more often and stuff like that.
Had loads of blood tests to start, now every three months
 
Are you guys worried about the thought that you might have to take aza for life just to keep your condition under control?
 
I'm worried about being off it, because although it didn't totally help me my condition has worsened since I stopped taking the azathioprine. I think what would I rather live with the potential side effects or even having to take a medication long term or live with my symptoms. I'd rather have better control of my symptoms I think.

Like Beth says is there really any major alternatives that will achieve the same goal, without the same length of time.
 
I guess it is worrying. But I know that if things went wrong it can be stopped.
Also I dnt rly think too much about the long term. 1. because it is scary. 2. becuase it is too far away and anything could happen.
One of the main things that upsets me about azathioprine is that it is dangerous to be pregnant on it. I meen I know I am only 18 and if I wanted to plan a baby then I could sort something out. But i always thought it would be nice (if i were in the right situation) to say 'lets just see if i get pregnant' but now everything will have to be planned.
xxx
 
I am worrried about the long term effects but hopefully medical research comes up with better treatments.
 
I've been on aza for about 8 years and never experienced a side effect. It's not enough to work on it's own but I know I'll need more of the more nasty stuff if I wasn't on it. So for me it's the best of several bad choices.
 
As I understand it the azatioprine reduces your immune system, and that's the effect that you want from it. Does this mean that you should consider the effects on your immune system regarding other things as well, for example with food? A lot of diets claims to strengthen your immune system with different kinds of food, should you avoid this then? Or is it on such a small scale compared to the azatioprine effect, that it doesn't really matter?
 

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