Hesitant about going on Imuran...

[Miggles]

Hi everyone!
This is my first post, but I'm feeling overwhelmed with making decisions about taking a medication, and need some outside views!

Just some history: I was diagnosed with Crohn's disease two years ago, when I went into the hospital with an obstruction, micro perforation and fistula. My symptoms up to that point were vague, and I'd been hounding doctors for a while about it - tarry stools three times over the course of several months, and vague stomach pains, and joint pain - I'd always been prone to tummy aches as a kid. I was put on steroids, which didn't work because the blockage was due to scarring rather than inflamation, so eventually I had surgery to remove the damaged area. They did a beautiful job, and I've been doing very well for the past two years with no medication. I would get diarrhea maybe every week or so, which never happened before surgery, and there were some embarassing outings, but I wasn't attached to the loo regularly or anything. Earlier this month it seemed to me like I had another blockage - three weeks of no joy, and I went in for a colonoscopy to see what was up. (And wouldn't you know it, the day before I took the prep I had to sprint to the bathroom again! I felt better a week or so after the scope, but I'm still sprinting to the washroom more than usual - though its nothing compared to most people's experiences.)

Anyways, I went to my GI doctor today for a follow up of the scope, and he told me that while he was really pleased with how things looked, there was some evidence of active crohn's disease again (minimal albeit), and he thought I should go on Imuran for maintenance. He told me to do some research, write down some questions and come back to him in a month to talk about it.

So I'm doing that! The initial idea of Imuran scares me a lot - from what he told me and what I've read it seems like a drug that's not to be messed around with, and it seems like it's reserved for more serious cases, and that my symtoms aren't serious enough - I'm worried it would give me more side effects than the actual disease does. But then again, the damage from the first time seemed to be so gradual that I didn't even notice, so I sometimes I feel like I have to second guess myself! I trust my doctor's opinion, and clearly we both want an informed decision to be made.

I'm brimming with questions and concerns about going on any medication. Is Imuran really my best course of action if I haven't tried anything else yet? Are you on Azathioprine/Imuran, and what was your experience of it? Has anyone gone on it for only mild symptoms or to stay in remission, and has it been worth the risk?

Thanks everyone - my thoughts are still really fuzzy because this is such a new and unexpected turn of events, but I'm sure they'll get clearer with time and feedback. I'm going to do my best to write down questions for my doctor - and the first of them is why Imuran is his first choice for me.
Cheers!

Magda

 

[violetcreams]

Aza has made a really positive difference for me (but I still need to be on a medium dose of budesonide, or things start to kick off again). For the first couple of weeks after starting tha aza, I felt really rough but after those initial weeks, I began to see a definate improvement. I've been taking it for about a year & a half now. Try to look at it in the context of positive risk taking.

 

[DustyKat]

Hi Miggles and :welcome:

I was scared as hell at the thought of my daughter needing to take something like Imuran and now I find myself facing those same emotions again with my son. I put my thoughts down a while ago in another post about maintenance meds..........

I think most would agree that Crohns is not curable at this point in time and therefore the aim is to gain remission and stay there for the optimum period of time. Roo's surgery put her straight into remission and she has stayed there but I view Crohns as a disease that is lurking and waiting to strike when the time is right so if I can regulate that response to some extent then that's what I will do. I see Imuran as a preventative medication much like Pulmicort is for an asthmatic, it stabilises your underlying condition so hopefully you can avoid or at least lessen the occurrence of a full on asthmatic attack.

Another point I think worth mentioning is while ever Roo has Imuran in her system then should the need arise to increase the dose she does not have the waiting period for the medication to start taking effect.

In Roo's case the decision to commence Imuran 3 months after her surgery was difficult in one sense, potential side effects, and not so difficult in another. Roo was diagnosed on the operating table and we came very close to losing her, it is something that I never want to experience again so for me anything that reduced the chances of that happening I was willing, with her consent, to try. Fortunately she has now been in remission for close to 5 years.

My son on the other hand is newly diagnosed and due to Roo's experience was diagnosed within 3 weeks of his first symptoms, which were mild to say the least. He is travelling the same path as you.....no obstruction but microperforation, fistula and abscess, with surgery looming very soon.

It would seem in the case of my children that they developed severe disease quite quickly and seeing my son now with a pigtail drain insitu and taking antibiotics over a prolonged period of time is heartbreaking. My hope above all else is that he follows his sister, post op, into a lengthy remission. If Imuran assists him to do this then I will advise him to take it.

I have had two entirely different pre op periods with my children and neither of them is pretty but Imuran has served Roo very well indeed. I think you are well truly on the right track arming yourself with as much information as possible and questioning the doc! I know in Matt's case he opted for Imuran straight up due the location of the disease.

I wish you all the luck in the world with the decisions you need make. Keep us posted!

Take care,
Dusty

 

[Boroukee07]

Hi Miggles

I am new to Crohns and new to Imuran too. I was diagnosed last year after suffering for 3-4 years, lucky for me it's mild to moderate. The consultants here in Ireland start patients with aggressive treatment at the beginning to try and prevent surgery or at least prolong time before surgery is required.

I began Imuran a little over a month ago at 50mg which was fine and then last week increased to 100mg and began feeling ill straight off. 100mg just makes me nauseas so I phoned my IBD Nurse who told me to dicountine as it won't improve and I'm back to see the consultant on Monday. I will probably began Mercaptopurine which is in the same family of drugs. The side affects seem a little worse but I weighed up the pro's and con's and came to the conclusion that I feel well now (from Pred) and just want to stay this way.

Its difficult decision to make and we do put our trust into strangers (the docs) but they are the experts and sometimes you just have to take a leap of faith. I really thought the Imuran was for me and I'm so disappointed that it's not, as it seems to work so well for so many patients. Hopefully this new drug will be the one for me (fingers crossed).

Best of luck with your decision

Maria

 

[Mark63]

Hi Magda,

Welcome to the Forum. I'm sure that you will find the help and support that you are looking for on here.

I thought that the following document may help answer some of your questions.

http://www.nacc.org.uk/downloads/factsheets/drugAzathioprine6MP.pdf

The drug did not work for me as I reacted badly to it right from the start. Don't be put off by my experience as there are many more people for who it works very well.

Mark

 

[Anna.Theo]

Hi Miggles, welcome to the forum!
I am new to this forum too, i joined as i had the exact worries that you have about taken Imuran! After much thought i decided to go ahead and start the medication, i have been on 100mg since last Thursday, so far so good, i have slight nausea, however i find that if i eat something it soon goes away, you just have to remember, once you are on this drug you will or should be monitored weekly for the first 6 weeks and then every 3 months so if there is something going on which should not be then doctors will pick it up from your bloods straight away. Remember everyone body reacts different!!

 

[e13 boy]

Hi Miggles,

Which treatment a Dr prescibes for a Crohn's patient can vary a lot from my past experience.When i was in hospital 3 years ago (a few months before my 2nd resection) i was put under a different consultant to my usual one.He tried drug therapy to try to save me from another resection,which my usual Dr didn't ever do.Following the failure of steroids i faced the knife again.
The 'new' Dr told me many times i should be on Imuran(Aza) or something similar post op'.Following the op the 'old' Dr told me i didn't need Imuran.I got myself moved to a different hospital,had all the usual tests(5 months on from resection) & my new Dr's told me i had to go on imuran,so i was started on 75mg then on to 150mg.I was not able to tolerate this drug(or 6mp).

Best Wishes

 

[Miggles]

Hi everyone!
I want to thank you all for taking the time to reply - it's been very helpful!
I went to my family doctor yesterday to get more info, and see what his thoughts were on me taking Imuran. So now I have two doctors who think I should give it a try.
He assured me that any most side effects could be reversed by going off Aza if I reacted badly, and that i'd be closely monitored - which is both reassuring and scary!
He went over the facts, and was very empathetic with the fact that I was having a hard time making a decision and that there really was no right answer. And he also invoked the hippocratic oath to remind me that they wouldn't think of prescribing something with greater risks than the disease itself without good cause. So... I feel a little better about the situation. I still have some thinking to do, and the blood tests will suck, but I'm leaning towards it. I still have lots of time before I go back to the GI doctor, so that's good!

For the people who have not tolerated Imuran well - what were the symptoms you had that made you stop taking it? Also, what were the first weeks on the drug like for everyone? I've heard it's a bit rough - do you feel like you're coming down with the flu, or something like that?

 

[Mark63]

Hi Magda,

I developed pancreatitis. Symptoms were nausea, indigestion, pain in the upper left abdomen radiating to the back and generally feeling unwell. Symptoms got much worse within an hour or two of eating. Diagnosis confirmed by rising amylase level on blood tests. Stoped taking the drug and had a couple of weeks on Lansoprazole to help settle the stomach.

I have had ongoing gastritis/duodenitis since, but there is no way of knowing if this is in any way connected to the aza.

Mark

 

[LOSTnut]

I was on 100 mg and got nausea, vomiting and hair loss -- stopped taking Imuran after abdominal surgery because of the side effects.

 

[e13 boy]

I started on 75mg then up to 150mg

Feeling sick ,vomiting,Fatigue(which slowly got worse),thumping headaches,'flu',colds,White blood cell count at dangerous levels.

Azathioprine - got CD 80% under control but it made me so ill.

 

[kg44]

Hi Miggles,
I was started on Imuran last year and was going along quite well and managed to increase my dose to 100mg. A few weeks in, I developed a high fever every night for about 4 nights, sweats, body aches, and extreme back and joint pain. I think I'm a pretty tough cookie, but eventually all the symptoms got so bad I couldn't stand up or walk to the bathroom! I was such a mess my husband took me to hospital and insisted I was admitted, CRP sky high and very dehydrated from the continual fever. They stopped the Imuran and gradually I felt alot better.

During follow-up, my Dr thought maybe all of those issues were due to a flare and
suggested a trial back on Imuran at 25mg. I agreed. The next day, I felt like I had been hit by a truck! Extreme back and leg pain again, fever etc and it took me a whole weekend to come good...

My Dr did say that a reaction like mine was pretty uncommon. Suffice it to say I am now on MTX.

Good luck, I hope it works as well for you as it does with many others and you can share your Imuran success story with us!

K

 

[hawkeye]

I have been on it (started at 75 mg/day, now at 100 mg/day) for almost 20 years with no noticeable side effects. I also take 5-ASA (3000 mg/day).

Mark

 

[Miggles]

Hawkeye - it's really reassuring to hear from people who have been on it for so long with no side effects!

So, another question I just thought of - does anyone wear a medic alert bracelet or some kind of medical ID because you're immunosuppressed? I've been wondering about this one!

 

[Lisa]

nope - I don't wear any type of bracelet...probably should due to my drug allergy (dilaudid!).....

 

[Miggles]

Hey! I just thought I'd updated you guys on what's happening - I just took my first dose of AZA (with food!). I'm starting on 50mg, and the GI doctor wants me to go up to 100 later on. I have my first blood test in a week, but the doctor still have to communicate with eachother about how often I should have blood work done (my family doctor hasn't had a patient on Imuran before). So! Will update again soon if anything "exciting" happens.

And I did ask about medic alert bracelets etc, and the GI doctor said that the risk wasn't enough to need one - so thats good!

 

[Miggles]

Okay, so tonight I took my fourth dose of Imuran, and 3 out of 4 times I seem to have gotten diarrhea about 20 minutes later. Its not the worst side effect I've ever had from a pill - more of an inconvenience- but if it continues, it's fair to say that the side effects are worse than my actual Crohn's has been. I sure hope it goes away soon! I want to be able to go out for dinners in peace again! Beyond that, nothing really to report. I'm achey, but that has 99% to do with me going to the gym and digging a garden in the same day. Go me!

Edit: suddenly got nauseus a few hours later, which went on for an hour until I took a gravol, then promptly un-took a gravol. :/ Ick. I think I'll be calling my GI doctor tomorrow to find out if this is a 'tolerable' side effect that will go away.

 

[beth]

That sounds familiar. I'm glad you decided to go for it, because I was in a similar position and prevaricated taking it for about 3 months. During which time my Crohn's got worse and I got peripheral effects, like sacroiliitus.

As for nausea, many people do get over it in a few weeks. Ask for an anti-emetic from your docs. It gave me horrible pains over my pancreas and blood potassium levels rose which indicated kidney distress so I was off it.

 

[vickyhunter]

Aza is brilliant! I've been in pretty much full remission for 6 years (with a few hiccups, but expected, can't be perfect!). I've never looked back since going on and will stay on as long as I can I hope it works as well for you!
xxxxxxx

 

[Agent X20]

I've been on Imuran for about 4 years. I'm taking 50mgs three times a day. I wasn't very happy to go on it, and I'd be quite happy if I could come off it. But the truth is that it has made a very positive difference to my symptoms and my experience has been very good.

You are so closely monitored at first that I think it's worth giving a try. Now I just have a blood test every three months and haven't had any problems.

 

[Miggles]

Hey guys! Thanks for sharing your positive stories! Things are already starting to get better. Most of my side effects have gone away after the one really rough night. I ended up talking to my GI doctor the next day and he wanted me to keep taking it until we at least do the first blood test, and the next time I took my pill, I was waiting for something bad to happen and it never did! So hooray!I'm not completely free from side effects- I've noticed that my whole mid drift has been a little achey, especially my kidneys - but it's so minor that it's not that concerning to me right now. I'll mention it when I go in on Monday when I go for the bloodwork, and we'll see what they say when they get the results. Things are looking up though - I'm hoping this drug will be worth it!

 

[Nytefyre]

Hey Miggles,

Welcome to the forum(it looks like a lot of people beat me to it, lol)!

I, too, just started Aza. No probs yet. Hoping that this med will be sensible and not go giving me any probs.

Good luck! I hope you find relief on Aza!

 

[Miggles]

Hey hey! I just finished week two on Imuran, and so far so good, mostly. I've still been having more diarrhea than usual, but I think it's getting a little better. I had achey joints that I thought were from gardening, but they lasted far too long for that, so I think they were a slight side effect, which seems to have gone away now too. My nausea's gotten better for the most part, and I only had to take gravol on maybe 2 or 3 nights. I get a little more out of breath when I'm active, but it's barely noticeable. Anyways, the blood labs must have been fine since I haven't heard from the doctors. And, because I have the brain if a four year old, I buy myself an ice cream after each blood test. So far, mint chocolate chip is king! all and all, I think things will keep getting better. I want to give this med a good try before I rule it out!

 

[vickyhunter]

sounds like it's going really good! haha love the ice cream thing! Hope it continues to be this good
xxxxxxx

 

[jonimas0151]

Hi Miggles,
I just started on 100mg 4 days ago. So far, I haven't noticed any symtoms at all. I am currently tapering off Predisone 15mg now, and my new GI doc thinks this will work much better than Pentasa for maintaining me now that I am pain free. I have to get weekly blood test for 1st 2 wks and then bi weekly, then they are gonna see me again.
I know this isnt much info, but thought I would send you a note. I was pretty scared and still am, cuz of all the horrible things they were saying about blood cancers etc possible while on imuran.
good luck!