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Hesitant about Imuran... PLEASE HELP!

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Posted 8/21/2009 10:21 PM (GMT 0)
I am currently on Humira, Asacol, and Cortifoam, and nearing the one and a half year mark on my current flare. After successfully weaning myself off prednisone last month, I am finding that I am experiencing more cramping and frequency. My doctor wants me to try Imuran, as it is one of the few medications I have not tried yet.

Unfortunately, I have an extreme fear of vomiting, and from what I've read, it's a rather common side effect. I don't think I could handle it any better than I handle my current issues. I'm also about to go back to school for my second year of university - I can't make up my mind as to whether or not I should try it!

Please, please, anyone who has tried Imuran on this board, please tell me your story, whether it's good or bad. I just want to hear some other people's experiences.
Posted 8/21/2009 11:58 PM (GMT 0)
I used Azathioprine/Imuran for a over a year and didn't see any benefit from it, however it has worked well for many others. I never felt nauseated at all, so don't worry too much about it. And if you can't handle the side-effects then you can get off it.

From what I learned from others, the best time to take it is in the evening. That way you're asleep by the time it's in your system, and avoid nausea that you might get by taking it in the daytime.
Posted 8/22/2009 12:03 AM (GMT 0)
I have been on azathioprine / Imuran for about 2 months now.

My big complaint is fatigue. Before I was on Pred and I was lucky if I slept 3 hours a day.

Now I could sleep 12 and want to sleep more.

Go figure, no happy medium! :)

Good Luck,

Jen O
Posted 8/22/2009 1:22 AM (GMT 0)
I agree with the sleep thing Jen O said.

I've been on it for about 8 months and it's working for me. However, I still have the problems I always had (around my period =/) but other than that....I've only had a few minor blips. I actually can eat whatever I want to, and even those foods that made me sick for weeks after (strawberries and most other fruits) I can eat now. =]
Posted 8/22/2009 2:03 AM (GMT 0)
been on it for about 3mo.....so far so good... off pred, over the fatigue... have to have blood work weekly for a bit, but for me it was worth a shot before remicade....
Posted 8/22/2009 3:00 AM (GMT 0)
Used a year and saw no improvement, and no side effects either.
Posted 8/22/2009 10:45 AM (GMT 0)
I'm on 6mp which is similiar and from what I understand, the ones that have severe vomiting from these meds are usually the ones that can't take it. When I started I had slight nausea but never once had I vomited. And even the nausea didn't last long.
Posted 8/22/2009 12:17 PM (GMT 0)
     I was on 6MP.  Doc took me off because he had me on too high of a dose, 100mgm, to get me out of this flare and my white count dropped drastically to 1.6.  Been off it for two weeks and had a stat CBC done yesterday to see if my WBC's increased any....hope so.  But, as for the nausea issue.  I never felt sick to my stomach....but I was extremely fatigued.

     Will your doctor keep you on the Humira along with the Imuran? Sounds like a double whammy to me.

Posted 8/22/2009 1:14 PM (GMT 0)
On it now. Been a little over a month. Not sure if fatigue is from it or what but I am still down on energy but I was in the hospital for 2 weeks and doctor chalks it up to recovering from that still. I have not seen any other side effects yet.
Posted 8/22/2009 1:52 PM (GMT 0)
Yes, my doctor plans on keeping me on Humira. He says that he finds his patients usually benefit most from a combination of Humira and Imuran. So far the Humira does not have and side effects for me, aside from some minor fatigue on the day I inject myself.
Posted 8/22/2009 2:20 PM (GMT 0)
I took Imuran for over two years with no side effects. I agree with Sherry, people who have side effects most often seem to have blood tests showing that they don't metabolize the drug well.
Posted 8/22/2009 2:57 PM (GMT 0)
I had no problems on Imuran. I had no side effects from that medicine. It helped me achieve remission. It's worth a try...
Posted 8/22/2009 3:59 PM (GMT 0)

Hello,

I've been on IMURAN for over a year now and think it is brilliant.  Like you I was extremely hesitant about taking IMURAN after reading about the side effects.  But I was practically on steroids for a year on and off which worked for me once I was on them but as soon as I stopped taking them I would start to get ill again.  I put on loads of weight and just didn't feel or look well.  So I made the decision to take IMURAN and have never looked back.  I did have the nausea feeling a lot but after reading some comments on this site changed to taking it in the evenings.  I also bought myself a pair of acupressure travel wrist bands so whenever I feel nauseous I just slip them on and they seem to work pretty well.

I feel like I have got my life back on track and do not have that anxious feeling when I am meeting friends at restaurants/bars or days out where toilets are not so easily accessible - no longer a problem!  I have also found that foods that I could not eat before I can eat whilst on the IMURAN....so an added bonus for me.

By no means is IMURAN perfect especially the changes it makes to your body but I have not had any bleeding for over a year now and more importantly I just feel normal.  I am also taking mesalasine (4 tablets a day).  

Good luck.

Posted 8/22/2009 11:01 PM (GMT 0)
I love Imuran! I haven't gotten any side-effects from it. Personally, I can take it in the morning on an empty stomach and it doesn't bother me at all. It's kept me in remission for a few years now. (I was headed/am heading towards a mild flare but that's from the hormones in my birth control and if it wasn't for that, I'd still be great!). I would definitely try it. I haven't been on pred since starting it. And if you're worried about getting sick, don't be, that will just make you more prone. I take vitamin c when it's cold/flu season, and when I'm around sickies. Also get your flu shot. Bloodwork is no big deal, in fact it makes me feel better knowing people are paying attention to my health.
If you do research you may see something about cancer/lymphoma but I understand that to be happening to people who are on very high doses to prevent organ rejection after transplants. UCers aren't on those doses so I think we are fine. Good luck!
Posted 8/25/2009 3:12 PM (GMT 0)
I am on Azathioprine for more than a year and had no issues. Reading side-effects did freak me out in the beginning but the GI and the nurse in the hospital are very good. They checked my blood almost a week in the beginning till they stabilized the dose. There used to be thorough interrogation during that period to make sure that I am not missing anything.

I have had no issues with it. Certainly, the flares reduced. Last week the thing came back and this is almost after one year. (And I am a grad student who is working on his PhD under extra-ordinary stress)
Posted 8/25/2009 6:16 PM (GMT 0)
ive been on imuran for 2 weeks now.
i get nauseaus every time about 1-2 hours after taking it.
i puked the first 4 times, then ended up taking it after dinner.. still puking so now i take it right before bed.

actually im not having a very good night right now.
my back hurts bad, im nauseaus and cannot sleep at all right now.
so im here looking up side effects and reading forum posts.

i feel like i have the flu. lasts about 4-6 hours and then im fine all day long with no problems.
havent vomited tonite yet or the last 3 days so thats good.
but i do feel horrible.

hopefully goes away and i will be fine. im crossing my fingers.
but dont let me scare you. it looks like im in the minority here. you should go for it. you can always stop anytime.

does anyone have any advise on easing the nausea.

londongirl --- where does one get these wrist band thingos ?
Posted 8/26/2009 3:13 AM (GMT 0)

Hi

I was on imuran from Oct 07 to Sept 08.  My dosage was increased to a pill and a half in May 08.  I stopped having my period by July and in September/October 08 i spent over 20 days in the hospital on courses of antibiotics and steriods to help with an infection caused but my severe UC (leaky bowel).  The docs concluded that the imuran gave me temporary neutropenia (low neutrophils) and my bone marrow was staring to shut down.  I had the surgery Oct 08 and feel great and happy to be off those meds.  My only advice is please don't stop your regular blood work even after it turns out to be fine for several months and a flu may not be only a flu.  I didn't experience stomach upset with imuran.  Best of luck to you.

Posted 8/26/2009 3:45 AM (GMT 0)
I love it. But it all depends on YOU. So many people benefit from Asacol, but when I was on Asacol, I reacted with every side effect possible and it made my colitis WORSE. Lialda is what works for me in that area. So Imuran may or may not work for you. The only thing you can do is give it a whirl. Luckily, I'm having a huge success with it and I hope that if you try it, it'll work the same.
Posted 8/26/2009 6:53 AM (GMT 0)
i almost just went to emergency room.. with severe upper abdomen pain that extended arournd my sides and back. trouble breathing. dizzy.. went to gp instead and he gave me pain killers and anti-nausea pills. maxalon i think.

got a blood test and find out tomorrow if its pancreatitis.

thanks imuran.
i hope its not, cuz i want to take it for my uc and psoriasis.
Posted 8/26/2009 4:27 PM (GMT 0)
I have been on Imuran for several months. I had trouble with it at first, but I decreased my dose and increased it gradually. Now I'm taking 150mg/day and it seems to be going okay. I'm also currently tapering from Pred (again) and I'm hoping that my current, relatively symptom-free state has something to do with the Imuran/Remicade combo.
Posted 8/26/2009 10:03 PM (GMT 0)
I felt the worse I ever felt in my life after a week on Imuran. Nausea, headaches, fatigue, severe bruising...it was the worst. After I recovered from being on the Imuran I tried Remicade, which worked for awhile (two years now), but now I am pretty sure I'll be having surgery over the winter. I just can't take these meds any more and the Remicade is not as effective as it was at first.

Meesh
Posted 8/28/2009 3:45 PM (GMT 0)
Imuran is great stuff.  I take 200mg/day and have for 2 years now.  At first I had some mild nausea and tiredness, but that all went away after a few months.  I take it with breakfast every morning.  I get my bloodwork checked every 3 months on the dot.  No issues.
Posted 8/28/2009 10:44 PM (GMT 0)
     Could someone explain to me exactly what is the difference between Imuran and 6MP?  My doctor never offered Imuran and I have been on 6MP for about seven years.  He recently had me on 100 mgm but it lowered my white count to 1.6.  I had to stop it for a few weeks and he had me get a stat CBC.   White count went up to 5.0 and now the doctor placed me back on the 6MP but at 50 mgm.  I am tapered down to 5 mgm of prednisone.  Still have pain in the rectum, so I know I am still in a bit of a flare.  No bleeding, no urgency, just that darn discomfort.  Guess the UP is letting me know it's still there and wants to be my best friend rolleyes
Posted 8/30/2009 4:27 PM (GMT 0)
I have been on imuran for four years. After I came off of prednisone in 2005 I went on 150 mg of imuran and have been symptom free until April 2009. I found in the first weeks I had joint pain, and blood shot eyes, but after that it was smooth sailing. I never once threw up as a side effect.

I am currently in a flare, which has been caused by losing a job and my father is ill. However I have read that imuran stops working after 4 years.

If I could live symptom free on imuran my entire life I would in a second. My doctor has now increased my imuran to 175 mg and I take 500 mg of salofalk orally and in enema form (not fun).

Hope this helps

Mel

Posted 10/20/2009 4:03 AM (GMT 0)
I'VE BEEN ON IMURAN 4 MONTHS NOW AND I LOVE IT.  PAIN IS LESS AND AM REGULAR WHICH I HAVEN'T BEEN IN 5 YEARS.  FIRST YOU HAVE TO REMEMBER EVERY MEDICATION HAS SIDE EFFECTS AND EVERYONE RESPONDS DIFFERENTLY TO MEDICATIONS DEPENDING ON AGE, SEX, OTHER MEDICAL PROBLEMS.  ANOTHER THING IS THAT IT DOES TAKE 2-3 MONTHS TO START WORKING.  YES, I DO ALSO EXPERIENCE FATIGUE WITH IT AND THAT IS MY MAIN PROBLEM BUT I ALSO WORK THIRD SHIFT AND HAVE BUSY LIFE STYLE.  IT IS ALSO MUCH CHEAPER AS WELL THAN THE IV TREATMENT OPTIONS.  I HAVE A FRIEND WHO HAD TO STOP TAKING IT BECAUSE IT DROPPED THE WBC TOO MUCH THAT'S WHY THE FREQUENT BLOOD TESTS WHEN YOU START IT AND THEN SEE IF YOUR BODY CAN TOLERATE IT.  NEVER HAD ANY NAUSEA...HOPE THAT HELPS...

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