Imuran - scary medicine or no?

Hi, first of all, thank you to everyone at this forum for sharing your experiences with Crohn's - I have found many helpful things here by reading what you guys are going through.  I suddenly got Crohn's back in October, and it was really scary but a lot of the scary things seem less bad for some reason when I know it's not just me.  So thanks!

I was wondering if anyone else using Imuran could tell me what it's like to be on it.

Imuran sounds really scary...liver damage, propensity to develop tumors and cancers, severe nausea and vomiting possible...I'm worried that the Imuran might make me sick in worse ways than the stupid Crohn's.  I'm hoping the odds of those bad side effects are not very high odds and I don't have to worry about being even sicker and missing work.  Unfortunately, I can't really find any information about how often each of these side effects occurs, apparently because Imuran is a really old medicine (1968)?  The FDA only listed its side effects and certain precautionary testing your doctor should do before starting you on Imuran, and had no statistical reports of Imuran side effects.  The only "happens approximately this often" type of thing I could find was from a British website, which was helpful enough to inform me that approximately 1 in 1000 people have their hair fall out due to Imuran.  I really hope that doesn't happen, but at least I know it's not really in the "totally unlikely freak accident" category of side effects.  I have no idea whether or not the other bad side effects are "freak accident" type of stuff, but I sure hope they are :(

I have been on Lialda max dosage since October, but unfortunately 3 weeks of no prednisone, things flared up again.  The doctor says I need stronger medicine, like Imuran, and has me back on the prednisone, which is helping.  I'm supposed to start Imuran any day now, as soon as some lab tests come back.  If Imuran is really as horrible as it sounds, I think I'm gonna ask him for some different medication instead.

In my honest opinion, I think reading the side effects of even OTC meds can be very scary.

My Daughter has been on Imuran almost 5 years along with Remicade (which is very scary too). She definitely prefers these meds over Prednisone and its side/after effects any day. She has had no side effects from Imuran.

My Daughter was diagnosed 8 years ago. She has definitely had some hair thinning. Nothing major. Hair thinning can happen with meds and/or just poor health overall.
IBDers don't always absorb nutrients and vitamins like healthier people do so a big cause for hair thinning. There are some IBDers who have had significant hair loss. Many have a wonderful regrowth too.

You can ask for a different med, but once you get past Mesalamines they will all seem pretty scary to you. You have to remember that all possible side effects have to be listed even if only a small fraction/percentage of patients suffered them in clinical trials. Usually the benefits outweigh the possible
side effects. Only way to know, is to try.

I am taking 150 mg imuran a day. I have been on it for several months. At first I did seem to have nausea but it does not happen much. I have seen some improvement in my CD so I think it is well worth it. Make sure you never miss a blood test and take care of yourself. I agree that sometimes the pamphlet with the meds can be scary. For me having CD symptoms with no meds to control it seems even scarier! Karen

I started Imuran in early 2003 and have been on it every since at varying dosages depending on weight loss or gain.

Frankly, I find the biologics such as Remicade, Humira, etc. that the researchers are so high on now one heck of a whole lot scarier that Imuran or 6MP. They've been around longer, we are on lower doses than those doses used for kidney transplant patients and the risks of ... what is it? lymphoma? (I've been on it so long I've forgotten which it was) seem to be related more to the need for the kidney transplant.

I didn't experience any hair loss. I did experience thinnnig of the hair texture, my hair is not so coarse at it was and when my dosage (due to weight loss) got so high that I was in POTENTIAL hepatotoxicity range according to the Prometheus ProPredict Metabolite test and above maximum therapeutic dosage but w/regular blood tests still normal I did experience some MINOR hair thinning which ended as soon as we reduced my dosage to that recommended for my weight at the time.

At first I MIGHT also have experienced an increase in "the tireds" but it was hard to tell for sure. Taking Imuran or 6MP in the evening or at night can reduce or elimintate both "the tireds" and the nausea if you encounter them. I've taken my Imuran at all hours of the day w/no problems and no side effects for several years now.

We all vary in our responses to meds but as I say, personally, I felt more comfortable starting Imuran than I would Remicade, etc. And its not like I wasn't leery of starting Imuran. I wouldn't even let my local gastro start me on it. I opted to drive 2 hours to U of M to start Imuran as part of their Immunosuppressant Monitoring program.

Imuran and 6-mp are essentially the same drug, and I have been on 6-mp for five years with no problems. Yes there are some side effects for a small percentrage ofpatients, but they can often be overcome by adjusting dosage amounts or times. Overall the immunosuppressants are well tolerated by most and generally effective for a great many Crohns patients. I would discuss these concerns with your doctor. Finally, the cancer risks are very very low for both of these meds, as noted taken at pretty low dosages for this disease. I have seen comments that our risk of colon cancer or lymphoma in the small bowel are probably greater from uncontrolled long term inflammation from the disease than from the meds that reduce that inflammation.

I've been on imuran for many years. It has never put me in remission. I'm not even sure how much it helps.

Anyone else here on imuran and in remission because of it?

 

Wow, thanks everyone!  I am much less scared to start the Imuran.  I agree that it does sound scary to take any medicine from the warning labels (I am ironically allergic to the tylenol that was mentioned above ) but I usually feel better seeing statistics on how unlikely it is that a bad side effect will develop from any medicine I'm going to take.  I was really freaked out that I had no stats to look at at all for Imuran, and although I am lucky enough to have 3 people at my job who also have either crohn's or ulcerative colitis to ask questions to whenever something happens to me, none of them have to take anything stronger than asacol to stay healthy, so I was like double scared.

My doctor surprisingly called today, thought they were closed for the holiday but they said my blood test finally came in and shows I am able to metabolize Imuran, so I'm supposed to start on that tomorrow.  I'm glad there's probably going to be nothing that happens to me from taking it, and I really hope that it actually helps me get better soon, I've only had 4 weeks out of the last 4 months that my insides have been working properly, so I look forward to possibly having good luck with this medicine :D  They even said since my allergies are all really bad that the Imuran might help me feel relief from those too by making my immune system chill out, so here's to hoping this stuff works!  I'll post about my Imuran experience in about a week in case there are any other people new to Imuran wondering how well it works in the beginning.  Thanks Lady G for posting that you feel better already from starting Imuran, I am so excited, I hope it works for me soon too!

Sorta off topic, but I hope my hair stays where it is, for the first time in years a guy actually likes me, despite all my allergies and my newly acquired crohn's problems that make most people run away in terror.  If I can at least keep enough hair to look presentable and get my insides working well enough to be able to stay awake longer than 11 hours a day without prednisone, that would be like the awesomest thing ever 

I've been on Imuran for a month now at 75mg a day.  I haven't had any issues with nausea or vomiting but have been shedding hair all over the place.  Luckily it doesn't happen in patches so I don't look like I'm going bald in places or anything! It just drives my boyf. mad when it comes out in the bed!

My doctor said he was less worried about the side effects on me on long term Imuran than on long term Pred and so far so good...

wow i didnt know that imuran could cause hair loss when i was on it. if i'd heard i probably wouldnt have taken it b/c i lost alot of hair while i was on prednisone believe it or not. N e way, even if u do lose hair there are so many great wigs and weaves out there it wouldnt even matter!

U should go on a date with the guy who likes u! it might take ur mind off of some things! ;o) i hope things work out

Haha, ChronieToo, if your doctors still don't believe you about Imuran making some people have hair loss, print them this

http://www.fda.gov/cder/foi/label/2005/016324s030,017391s013lbl.pdf

On page 6, right above "overdosage" in the "other" paragraph it has "steatorrhea" as a side effect, which is balding.  So there, doctors!  LoL.  I'm glad to hear the trouble it causes with your hair isn't too bad :)

Side note, I am laughing at myself, that pdf has almost all of the side effect percentages I was looking for, and I had already read it and just didn't understand it the other day.  [kick] LoL...

Did I mention you guys made me feel much better?  I have gone from dreading Imuran to being mad that the pharmacy didn't get my prescription and the doctor is on vacation today so I'll have to wait a whole nother day to start the Imuran.  I'm not quite expecting it to make me feel awesome right away but I am pretty optimistic about it helping me get better.  Crossing my fingers that it helps in weeks and not months :)

BTW - Thanks praying4healing, I did go on a date yesterday and it was a nice distraction.  I told him the good news that the medicine isn't so bad but reminded him that my hair might start falling out any day now and he actually offered to help me go hat shopping, he's super nice and it really helps whenever I can spend time with people who don't make me feel embarassed to be sick.  Also, ironically if I wasn't flaring right now and on prednisone, my silly immune system would make it where I can't even sit near him, since he has a dog and my dog allergies are -that- bad.  How's that for something unfortunate having a good side effect? :)

Hmm, what does pancreatitis do to you so I know what to watch for?  Hope it's something easier to detect than abdominal pain

I have been on it going on 5 yrs with no problems. When I first started it I felt tired alot, but that went away. My gi has me take it at night because it can cause nausea. We are on very low doses of it for our cd, per my dr. He says the ones that really are at risk is the ones using it at very high doses for other problems.
Susie

I have been on Imuran for about a year and a half now. 150mgs. No side effects apart from thinning hair at the start. I am pretty sure my hair is back to normal now. I have blood tests every 3 months to make sure all is well.

I asked my Dr how long I would have to be on this for and she said 'indefinitely'.
Does anyone know if this is normal? Will I have to take medication forever? :( darn it.
Oh, and I plan on having kids in the next 5 years, does anyone know what the deal is there? Do I have to stop taking it?