Imuran - scary medicine or no?

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map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 2/18/2008 9:32 AM (GMT -7)   
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.

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 2/18/2008 11:13 AM (GMT -7)   
I've been on 150 mg Imuran for 8 or 9 months now with no side effects. It helped me a whole lot with fatigue in the beginning, but it wasn't enough to keep me out of the operating room. I'm still on it, and according to my doctor I will be on it indefinitely. Remicade is next and he wants me to stay on the Imuran then as well. When I first started I took 100mg in the morning and 50mg at night, just to help ease my stomach onto the medicine. (Nausea seems to be one of the most prevalent side effects) After a couple of weeks I went to all 150mg in the morning and it hasn't bothered me at all. You can always try a med and if it does cause you problems you can go off of it. Good luck to you!
diagnosed 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 33f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bowel resection 9/07, healing well and feeling well. Entocort 9mg.


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 2/18/2008 11:19 AM (GMT -7)   
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.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/18/2008 11:38 AM (GMT -7)   
I have been on imuran for steadily for two years. I, like you was very reluctant to step up to the immuno-suppressant family of meds. They were first offered to me (6-mercaptapurine) in the mid-1980s. I filled the prescription but chose in the end not to take the drug. Instead, I "managed" by taking short courses of steroids when things got really bad and for the rest of the time, for the most part just accepted the disease symptoms. I figured if I could still manage to work that I couldn't be that sick and so it went. I wish now that I had had more courage then because the subsequent course has not been easy.

I take comfort from the fact that this is a tried and tested medicine and that usually crohn's patients take it in the lower end of the prescribed therapeutic range. In the end, you have to decide what you are prepared to live with and how it may impact your life down the road. If you have a very mild form of inflammatory crohn's and can manage with the lower end drugs great. But just stay real when making the assessment about your quality of life. Maybe ask your family, and close friends for their observations about how well you are managing, along with your own assessment and the findings of your medical team. It took an intervention from my PCP in concert with my husband, boss and good friends for me to face just how sick i was. I just wasn't ready to listen to the signals when they began tapping me on the shoulder. It wasn't until they were like baseball bats beating me over the head that I finally got the message.
Belleenstein:

30+ years living with Crohn's.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 2/18/2008 11:45 AM (GMT -7)   

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


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/18/2008 12:06 PM (GMT -7)   
Hi I have been on Imuran for almost 5 years and have no-side effects from the med.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 2/18/2008 1:24 PM (GMT -7)   
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.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 2/18/2008 1:27:15 PM (GMT-7)


Beth
Regular Member


Date Joined Aug 2003
Total Posts : 303
   Posted 2/18/2008 2:28 PM (GMT -7)   
I was on Imuran for years - it did make me nauseated at first and my hair did get a little thinner, but it wasn't bad at all. I did have bloodwork done every 3 months, but my liver panels always came back fine. I've been on Remicade in the past and am now on Humira.

For me, while the side effects sound scary, it was worth it to have my life back. Before I found meds that worked for me and allowed me to actually function, I was miserable. I decided that I'd rather take the (slim) chance of something happening years down the road so that I could enjoy my life now.

And, like Mary S said, if you read the potential side effects, it seems like a horrible idea to even take Tylenol. :)
Beth


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/18/2008 2:48 PM (GMT -7)   
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.

Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 2/18/2008 5:22 PM (GMT -7)   
I have JUST started Imuran and I thought the same thing...scary with all they told me..but so far, no side effects and I feel better now then I have in weeks....I also go for weekly blood monitoring to make sure things are okay and nothing bad is developting, so if you want, it is possible for them to closely watch over you to make sure its safe for you. My first test will be in 2 days to see if its doing anything bad, but so far, I am glad for my change in these meds. I look over all my meds side effects and lists they give me when I fill up, and personally they all seem to be a bit scary, so I don't consider this much worse. I'm glad you brought this up cause I was looking for the same info and experiences too!
26 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Imuran treatment with Prednisone tapering at moment.  Possible Fistula.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/18/2008 5:46 PM (GMT -7)   
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?
 
 

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/18/2008 6:52 PM (GMT -7)   
hi
theres a test u can take b4 some meds to see if ur at risk for the serious side effects. I honestly can't remember if i took the test for 6mp or imuran, but i think theyr in the same family. I know i have taken both and they both can have terrible side effects. Either way, i said that to say, when i took the test, my doc said my levels showed that i was borderline for these side effects so what we did was i had blood work done every two weeks to watch for whatever it was that could go wrong. Unfortunately i ended up hospitalized with one of my many infections and the doctors there took me off of it. Which i didnt mind b/c i couldnt really tell if it was working or not.

Mayb u can ask ur doc about the test and whether ud be able to have ur blood monitored?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 2/18/2008 9:32 PM (GMT -7)   

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 tongue ) 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  scool


john's girl
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 2/19/2008 1:56 AM (GMT -7)   
I was on Imuran for about 6 months with no noticeable side effects - it didn't work well enough to pull me out of a flare, but it lessened my symptoms GREATLY! I would recommend Imuran to anyone before starting the biologics like Remicade or Humira.

Good luck!

whaley
New Member


Date Joined Feb 2003
Total Posts : 15
   Posted 2/19/2008 5:45 AM (GMT -7)   
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...

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/19/2008 6:38 AM (GMT -7)   
Don't expect to see positive results from imuran immediately. It can take up to six months for imuran to take full effect. On the other hand, if you are going to have a bad reaction, it most frequently occurs at the beginning of your course of treatment. Best wishes for a slow but steady improvement in your health.
Belleenstein:

30+ years living with Crohn's.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/19/2008 7:07 AM (GMT -7)   
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
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 2/19/2008 11:46 AM (GMT -7)   
Any hair thinning from Imuran or 6MP at the IBD doses isn't going to necessitate wearing a wig!

As an interesting aside both my gastro and her NP swear up and down that Imuran and 6MP do NOT cause hair thinning but that Pentasa (mesalamine) does. Now, I was on Pentasa for years before starting Imuran w/no hair thinning or lost at all. I WAS on both Imuran AND Pentasa at the time but had increase Imuran and reduced Pentasa.

They insist they looked it up in their med book and no hair thinning listed as a side effect. Snort!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 2/19/2008 12:42 PM (GMT -7)   
Haha, ChronieToo, if your doctors still don't believe you about Imuran making some people have hair loss, print them this
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? :)

ana_e
Regular Member


Date Joined Feb 2007
Total Posts : 67
   Posted 2/19/2008 12:52 PM (GMT -7)   
Yes, imuran has been a scary medicine for us.
Our daughter was prescribed it last year when she was 3 and it gave her pancreatitis and a 10-day
trip to the hospital. She is thankfully off it now.
================================================================

map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 2/19/2008 1:29 PM (GMT -7)   
Hmm, what does pancreatitis do to you so I know what to watch for?  Hope it's something easier to detect than abdominal pain confused

ana_e
Regular Member


Date Joined Feb 2007
Total Posts : 67
   Posted 2/19/2008 3:12 PM (GMT -7)   
If you look up/read Imuran information, the known side effects list has - pancreatitis which
is inflammation of the pancreas. Thats why, there are frequent blood tests when Imuran
is first started. Few of the symptoms in our daughter's case were - severe vomiting(even
water would not stay), no appetite and fever. The blood tests normally reveal if this is
happening while Imuran is being used!! Pancreatitis is considered quite a serious disease
and hospital stay is necessary.
=========================================================

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 2/19/2008 4:15 PM (GMT -7)   
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


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/19/2008 6:24 PM (GMT -7)   
Would you consider doing the SCD diet? My gi doc wanted to put me on 6-mp but i didn't want to have anything to do with it. Here I am 6 weeks later and on my way to remission.
Pharmacy Student, Midwestern University
Class of 2009
 
I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.
 
If you have any questions about medications/drugs, feel free to contact me here privately.  I will attempt to answer them ASAP.
 
3200 mg Asacol
 
HAVE YOU CONSIDERED THE SCD DIET?  IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!


Aussiegirl2008
Regular Member


Date Joined Feb 2008
Total Posts : 80
   Posted 2/19/2008 9:22 PM (GMT -7)   
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?
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