Positive azathioprine stories please.

[Lilybensmum1]

My dh suffers from uc and due to a very bad flare up has needed to start azathioprine, I'm worried sick about the side effects but am trying to stay positive to support him.

It does not help that I am a nurse and whilst i see patients with IBD it's never the positive stories that must exist.

Has anyone positive stories they can share as I'm scared about the potential side effects. I think I need a reality check.

Hi Lilybensmum I have been on Azathioprine for probably going on ten years. I have had a few flares now and again but I am in remission mostly. It has given me my life back. I am off DLA and in work.

It does lower your immune system but in general after the first six months you don't notice any difference. I would definitely recommend it. If he has had lots of prednisolone I would also recomend he gets his Vit D level checked.

I was on it 18 years and it kept me relatively stable. I always had slightly abnormal liver results which were never cause for concern but after surgery last year they really spiked so they took me off the aza. Liver results now normal.

The only other side effect I had in all those years was hair thinning.

Thank you for replies,5608 do you mind if I ask is staying on aza the long term plan for you? I could only find information that related to a few years of treatment on it.

gobbin are you well now do you mind if I ask what treatment you are on now? Was your surgery related to IBD? All of the treatments can get a bit mind boggling at times. It's great to get personal views, my dh is not keen to go to support groups.

Ideally in the long term I will come of it but I am in no rush to do that.

My partner has UC too and started azathioprine earlier this year. He had tried every other drug and none of them made any difference. These days, he's pretty much like a normal person. He's not had a single infection, virus or cold. It's a relatively mild immunosuppressant medication.

I was put on Infliximab infusions Dec 2013 which had a remarkable effect (was still on aza at this point too). The Infliximab healed a perianal fistula that I'd lived with for 8 years within months.

Unfortunately, since 2009 I've been plagued with blockages due to scarring from earlier bowel surgery and in 2014 had to have an emergency ileostomy, which I had reversed in May. Throughout all of this I was able to keep the Infliximab infusions going until March this year. Have got to have final scan tomorrow to check that I have absolutely no infection or abcesses inside then I can resume the Infliximab straight away. If it has stopped working (which it might) I'll be on Humira.

All of the treatments have risks, but the difference in how they make you feel right now, today, is worth it. I feel better than I have for about 8 years, currently.

I've been on Azathioprine for Chrons for almost 20 years. I've needed a few rounds of steroids, but before the aza I was totally dependent on steroids for 3 years. It's made a huge difference to me and I think is most likely to be the long term plan, unless something better comes along, I've tried to come off it twice, but that's led to a flare up, which takes time to fix again. I get no side effects and don't seem to have any more illness than other people, although colds take longer to get over ( annoying, not the end of the world). In the 29 years I've managed 2 breasted children, a successful career and lots of travel. My life is entirely norma, and, aside from 3 monthly blood tests and a yearly consultants appointment, entirely without event from the point of view of my IBD. I think that most of my friends and family have actually forgotten I've got CD by now! I certainly wouldn't have managed that without the aza. I'm lucky that I don't feel at all nauseous on it, I know that this is a real issue for others.

I agree with others that if it makes the difference for now, that's good enough for me. Best of luck to your partner.

Thank you everyone I really appreciate your personal stories, you are all so amazing!! watching my husband deal with flare ups I know how awful IBD can be. gobbin I hope your scan goes well tomorrow. boggle you have achieved a lot!! that is what I was hoping to hear, at times it felt like IBD was going to rule our family forever and that a 'normal' life was not possible.

I hope you all continue to be well and live well thank you. .

There have been massive strides in treatments for IBD in the last 15 years. Hope your DH finds one that suits him and that he has ling spells of stability - it does happen!

Also, don't be afraid of him possibly needing surgery or bags - sometimes they are the only option at that point in time and are not necessarily permanent and can give long periods of stability

20 years and through 2 pregnancies - no issues. hope it works for him.

I don't have UC or Crohn's but had aza for another AI condition. Now on a different immunosuppressant as AZA made me very ill. (I am a rare bod - the majority do very well with Aza, and I do think if you need it then try it and see. My reaction to AZA - and a second one mercaptopurine - was very violent. I was completely floored by it so you'd not miss it if it happened to you or your partner!!). What i wanted to say was about the other side effects - things like higher incidence of certain cancers and blood disorders - anyone on this kind of med will get very reguaar blood tests and other monitoring. A problem would eb found very soon and dealt with. These effects ARE rare but most people don't get them, and usually the benefits outweigh the ill effects of the drug. I hope your partner does well, OP.