Taking the plunge with Azathioprine

[M101]

Hi guys

I am after some advice. My GI doc has recommended I start Azathrioprine but I can't decide wether to or not.

I have been on Entocort now for about 5 months, but on 9mg for only 3 of those months. I recently tapered to 6mg 2 weeks ago, and to 3mg yesterday. My doctor has been discussing immune suppresants for the past few months. My latest bloods show that my CRP has risen and rather than me putting off the Azathriprine any longer, he wants me to start them asap.

I am really worried about taking the immune suppresant and was hoping that some of you will be able to offer me some advice?

Ironically my Crohns is currently not as bad as it has been (I was diagnosed late last year) and if I was in the worst stage still, I would take it without hesitating cos it was so so bad. Its difficult to contemplate taking it now because it is not so bad, even though it is still pretty bad. My main problem is diahorrea, on average I go about 7 times a day. I still have problems with bloating after eating too and have had to cut out most foods out of my diet. If I eat any of the foods I shouldnt (all fruit, veg, fibre) I suffer massively (I struggle to find things to eat!). I am still taking Imodium quite regularly, on average 4 times a week. Imodium doesn't really work much anymore though.

I cant decide what to do. I asked my Doc if I am being too optomistic by thinking I will be okay when I come off the steriods and he said yes (my Crohns got worse whilst on steriods) and I asked him if I am being silly for not going on them and he gave me 'the look'. We discussed it for an hour last week and have discussed it at many consultations before. He said his worried I am going to become unwel and that he cant give me any more steriods. He said he is happy to support whatever decision I make though.

My main concern is that something bad is going to happen whilst on them and that I will blame myself for not really needing them. It is hard to weigh up the benifits when the risks seem so big.

How are you guys getting on with them? And can anyone advise from when they were in this situation? I was told that if you get any kind of fever, sore throat etc you need to see a doctor immediately. Is this true? And what happens when you are on holiday?!

It would be great to hear your stories.

Many Thanks

M xxx

 

[M101]

PS. I cant take Pentasa or Asacol as I seem to be intolerant to Mesalamine - both drugs have made me very unwell... More severe diahroea, sickness, etc and I have had to come off them both (I tried Pentasa first, before the steriods, and recently tried Asacol with the steriods in the hope that it will avoid the use of immune suppresants).

 

[rollinstone]

Hey, I was reluctant to start imuran, was scared of the potential side effects, I'm still tapering from about 7 months pred (finally on 7.5). Statistically I think you are more likely to get hit by car than getting any of the severe side effects, and as long as you get regular blood work done to monitor how your bodies handling it at first you will be fine. I wish I started it sooner to be honest, id be well into remission already.

 

[nitty]

I was also reluctant to go on Aza, but I have had no side effects on it and I am probably as much back to 'normal' as I will ever be - no more diarrhoea, pain or bleeding. I eat pretty much what I want (apart from popcorn - that's a no-no!).

I followed the advice I found on here for avoiding nausea (take it at night with your dinner) and have not had any problems in that respect.

Many of the nastier long-term side-effects are really more of a problem for those who have to take much higher doses than Crohn's patients (transplant patients take it to avoid organ rejection).

Think of the possible 'side-effects' of NOT taking it: inflammation - scarring - strictures - surgery....

Try not to just look at the negatives. Yes, there are many, but there are many positives, too. Try making a list of pros and cons to see if that helps you decide.

 

[guest78]

I have been on Aza for over two years now, and have suffered no side effects.
I just had to think, the alternative to not taking the stuff was worse both short and long term than taking it
Its really hard to knowingly pump stuff in to your body which may cause harm but it is needed!
For me, the positives definitely out weigh the negatives.
xxxxxxxx

 

[CrohnsChicago]

I was also diagnosed last year and have been in and out of flares...the docs told me I would eventually have to be put on Imuran or Humira/Remicade given the severity of the disease they saw in my colonoscopy and my symptoms. But I was uncertain and kept putting off the decision because i felt like prednisone always got it under control. Well, it never got it under control for long enough and this last flare I am pulling myself out of currently was the worst it has been for me thus far. I don't want to experience pain like that again or anything worse than that. I also didn't want to risk being constantly bothered with prednisone side effects. I reasoned with myself that it is better to get on something stronger now and get it under control then to continue to toggle back and forth between flaring and not flaring, further scarring the lining of my intestines and increasing the odds of crohn's complications.

So I bit the bullet and opted to take 6MP which is a variation of Imuran/Aza. I have been on it for a month and a half now and have had no problems with it. A few small headaches at first and what I thought was fatigue from the meds which I now believe was more from being completely worn out from the flare. Didn't even get the nausea that others have mentioned. In fact I am tapering off of prednisone now and seem to be doing much much better thankfully.

My only big concern is this summer as I have heard that it is very important to protect your skin from the sun and I love to be outdoors in good weather. The potential lupus, liver and pancreas complications are also an issue, but the routine blood tests monitor that and if it becomes a problem then the medication is stopped and I think the liver and pancreas issues can be reversed more often than not.

My main goal is to stop the flares but especially stop the bleeding which never really seemed to go away. Hopefully this will be the medication to do it for me. Since I seem to be doing OK at the moment, have not noticed any side effects yet and my blood tests have thus far come back fairly decent, the benefits of continuing this medication right now far outweigh the risks.

 

[CeeCeeGo]

Hello
Totally agree with everything said above. I was on Azathioprine but my bloods showed that it was affecting my liver. Now that my liver is back to normal, I will be trying 6MP and hopefully that will work.
I would definately give it a go and check out the advice on here for good tips to avoid the possible side effects.

 

[nitty]

With regards to liver problems, I recently reviewed the results of all my liver function tests because I had some other symptoms (female stuff) and I wanted to make sure that they were not caused by the azathioprine - my GP noticed that my results are better now than they were just when I started the Aza. I'm not sure why, but I'm not complaining!!:thumleft:

 

[Jim (POPS)]

I've been on Imuran for 3 months now and I think it is starting to work. I am having only 1-2 BM's a day now and I started feeling better about a month ago.

 

[hawkeye]

I've been on it since 1991 - I think it has been useful in keeping things under control for the most part. I have had a few flares that have requires prednisone over the past few years. I am also on Salofalk. Dosage has ranged from 50mg/day to 200 mg/day - now at 150 mg/day. I get blood work done every 2 months.

Haven't had much in the way of more colds or flu than normal (I get a flu shot every year - there are debates on this in other threads on the forum - let's try not to get bogged down on it here) nor more infections for that matter.

I try to make a point of sunscreen and long sleeves and a good hat when I am out in the sun.

 

[kh216]

I am now on 6mp but I did very will with azathioprine in the the past. I did not have any side effects. I do get regular blood work and right now, the only concern is my white blood count levels. However, the medication has done a great job in controlling my Crohn's symptoms. Personally, I think your doctor is on the right track. You said that you suffer from diarrhea and bloating and use Imodium four times a week. This would indicate to me that your present medicine is not working and it would be a good idea to try something new. If you do decide to try it, just remember to follow your doctor's instructions about getting your blood checked at regular intervals.

 

[Catherine]

My daughter has been on aza for 14 months without any side effects.

 

[alex_chris]

It's a different story for everyone.

I have been diagnosed in 1999, then refused to take anything really for 3-4 years except Pentasa, which really didn't help at all. Also didn't help that the GP I had wasn't really up to date on treatment. Got that bad that I had to have surgery (60cm of smaller intestine removed). Started with Aza after surgery and things got better - also because I did a lot of sport. I stayed on Aza until end of 2008, but my Crohn's actually wasn't good for those 5 years, especially when I stopped doing regular sports in 2006 and had too much stress at work.

When I changed jobs 2008 and moved to another country, things were pretty good for a while and my new doc said I should try to get off Aza if I am doing well - he worried about long term side effect. Well, for a year things seemed to be ok, but actually in retrospect, the Crohn's just gradually worsened. I refused to go back on Aza still, because you know, when there is just a very slow gradual decline, you don't really think it matters. Got a very bad flareup, with severe iron deficiency and protein deficiency in mid 2010 and went back on Aza and flare up treatment with cortisone treatment. Started to do more sport again and things got better.

But Aza can't prevent flare ups on its own. Towards the end of 2011 I had stopped regular sport again and there was quite some personal stress. My weight dropped and got hospitalised for anemia.

What really helped since 2012 and I have not lived such a good no flare life since before 1999 was getting my weight up with Nutricia Fortimel, steady iron supply with drinkable iron supplements (prescription drug, not the stuff from the supermarket...), and a wide range of other supplements from Vitamin D, magnesium, zinc, Vitamin B-6 and B-12 etc. I continue to take Aza (in total now 5 years + 3 years) and have never shown any side effects to it in blood tests - but Aza alone just doesn't help, people should be aware of that.

 

[FrancisK7]

PS. I cant take Pentasa or Asacol as I seem to be intolerant to Mesalamine - both drugs have made me very unwell...

I'm in the same boat as you, I started Aza three weeks ago and have already noticed improvement. No side effect at all on 100mg/day.

 

[CeeCeeGo]

Francis
That's great to hear that you are doing well - long may it continue

 

[M101]

Thanks for all your help and advice everyone - it is so helpful to hear all of your experiences and stories. I still haven't taken the plunge but I think I am going to in the next few days now. It would be amazing if it helped and I could get through the day without being reminded all the time that I have Crohn's by my symptoms!

Thanks again everyone, really appreciate it xx

 

[alex_chris]

Thanks for all your help and advice everyone - it is so helpful to hear all of your experiences and stories. I still haven't taken the plunge but I think I am going to in the next few days now. It would be amazing if it helped and I could get through the day without being reminded all the time that I have Crohn's by my symptoms!

Thanks again everyone, really appreciate it xx

Just always remember that (i) it takes a few months for immunosuppressives to really kick in and help and (ii) drugs alone will never be enough, but they are an important piece of the puzzle to get into remission (but stress relief, sport, vitamin therapy, good diet etc. are equally important).

 

[carolhew]

Hi everyone, I don't wish this disease combo on anyone. But I am glad to know I am not alone. The information we share is invaluable!

I have not experienced any side effects from Humira or Azathioprine, but do agree they are scary drugs! Now I need to find out if they are working, yes it is time for a colonoscopy.

Oh bg levels have been great this last week, yeah!

Carol


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily.

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.

 

[kh216]

Sounds like you are doing very well, Carol! :smile: