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Newbie here! My story. Just started Imuran!

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Ulcerative Colitis
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Posted 11/27/2009 1:44 AM (GMT 0)
Hi everyone!  I would like to start off by saying that it feels good to know that I can come here to ask questions, seek advice, and start helping others as well.  I feel quite alone having UC, sometimes it feels like no one else can relate... but here you all are.

Anyway, enough of the sappy stuff.  Here is my deal, long story short.  My mom has UC and it must be a mild case because she has been able to maintain for 20 years without meds.  I am a 30 year old male, diagnosed with a moderate case of UC in January 2009.  I tried most of the 5ASA's (Asacol, Colozal, Lialda) none of which helped.  Graduated to Entocort on top of Lialda... nothing.  After 4 months of discomfort I reluctantly went on Prednisone because I needed to be better.  Stayed on 40mg/day for 3+ months and assume I was in remission because I felt great.  I responded well to the steroid.  The only negative side effect experienced from the Prednisone was some facial pimples and a little backne... expected from steroids. 

During the taper off of Prednisone, I felt great.  As soon as I stopped, symptoms came back immediately.  So I jumped back on Prednisone because I was in a great deal of discomfort.  So now I am back on 40mg Prednisone and my body doesn't seem to be responding to it the way it did the first time.  Its been a month now and I am using the bathroom 5-8x per day, with "near misses" every day. 

Doctor suggested Imuran and I am willing to do anything that will help me.  I just started 50mg Imuran yesterday (ramping up to 150mgs eventually) and apparently I will be stacking it with 40mg Prednisone for the next couple months.  I also have been taking Lialda for the entire time and plan on continuing to do so for the long term.  Another FYI, I take every vitamin under the sun, eat healthy, and excersize 4-5 days/week. 

Can anyone offer advice on Imuran? I would like to know what to expect, both positives and negatives....

Thank you all so much for your help, advice, etc. 

Posted 11/27/2009 1:50 AM (GMT 0)
Can't give much advice. I was put on it almost two years ago. I waited and waited and it never helped. I had no side affects from it that I could feel at least.
Posted 11/27/2009 2:32 AM (GMT 0)
     I was on 6MP for seven years.  At first it did help me attain remission for two years, but eventually my flares started occurring yearly and within the last eighteen months....three big flares.  The doctor took me off the 6MP about three weeks ago or so because he put me on Remicade and he doesn't like his patients being on both.  I must say that I noticed a significant improvement in my condition two days after my first infusion on the 18th of Nov...no urgency, no bleeding and only one formed bowel movement..yipeeee.  My doctor is cautiously optimistic.  I am still on prednisone, tapered down to 25 mgm today and eventually...hopefully...will be able to get off that poison.  I know it does help us into remission but I've been on it far too many times in the past 11 yrs and it has given me osteoporosis, high blood pressure and now my blood glucose is high but the doctor seems to think it will return to normal when I come off the prednisone...let's hope so as both my parents were diabetics and my mother wound up on dialysis the last two years of her life.  I go for my second Remicade infusion on Monday.

     Let me add that the 6MP did take about 3 months to "kick in" along with the prednisone.   You are wise to go this route.  Hopefully, the Imuran will do the trick.  Good luck!

Posted 11/27/2009 3:00 AM (GMT 0)
I started out kinda like you, Asacol just wasn't doing the trick and I was on pred like four times. Eventually I was put on 125mg of Imuran (all at once, not gradually), and stayed on the Asacol until it kicked in. Took a few weeks for me, but most people here say a few months, maybe it depends. It works great! No side-effects, one formed stool once in the morning. I was afraid to stop the Asacol but eventually they scared me into it and the Imuran alone is holding things just fine. Hope it works for you too =)
Posted 11/27/2009 3:22 AM (GMT 0)
I am also unable to take Asacol, and some other drugs, but...the combo of Imuran and Humira brought me into remission. I was on Imuran for a year and a half, and had no problems, and a positive reaction to it. The annoying part though is the blood draws. I had to get my blood drawn every month for my doc to check on to make sure I was still fine with the Imuran.
Posted 11/27/2009 3:34 PM (GMT 0)
I just started Imuran about 3 weeks ago. I started with 50 mg and now at 100 mg. Had one Liver Panel done and everything's fine. I respond fairly well to Asacol at a lower dosage and just stopped the Rowasa enemas. I'm also tapering from the Prednisone, which I had been taking up to 60 mg and I've been on it since Sept 1st.

I'm in remission now. Blood labs show no inflammation. I'm under no illusion that things are completely back to normal in the gut. I seem to start flaring again as I get impatient and eager to get life to "normal" when I still need to back off and take it easy. Don't rely solely on the drugs to get you back on your feet. Remember to rest, watch what you eat, and eliminate major stresses. It seems to be helping me. This has been the hardest flare-up yet...

Hope everything works for you.
Posted 11/27/2009 4:25 PM (GMT 0)
I really like Imuran- I started it about 3-4 months prior to starting Remicade, back in 2007. I swear, over the long haul, the Imuran has done more for my UC than any other med. Yes, there is an increased risk of lymphomas with Imuran use, especially used in conjunction with a biologic. But..... I'll deal with tht if it happens! It's still an extremely small risk. It takes a loooong time to notice any change from Imuran, which I found frustrating because you don't get the instantaneous relief like with pred. Almost a year had gone by, & I realized "Hey wait, things have been slowly getting better over the past 6 months!". If you're willing to give it time, it's good. My liver enzymes have always been fine, my WBC is fine, etc. It made me pretty tired & foggy when I first started it, but I take the dose in the evening, before bed, so it's not an issue at all anymore. I love your signature, by the way- "devilishly handsome"...haha! devil
Posted 11/28/2009 3:03 AM (GMT 0)
Thank you everyone who replied.  I feel a bit more at ease now after hearing positive responses.  I responded well to Prednisone and I am hoping the same with 6MP.  I just hope I dont loose any hair... that would really suck.  Then my signature would say something like "devilishly bald and handsome!" 

So what is the deal with alcohol and 6MP?  I like to go out on the weekends and have a few.  By a few I mean about ten.  I am hearing that its not a good idea when on 6MP.  Any thoughts?

Posted 11/28/2009 3:11 AM (GMT 0)
I dunno... I might keep it very occasional. As in not every single weekend. You could still go out, just keep it down to a couple, not 10 lol. Unless it bothers you then don't. Also, even though like, nothing bothers me as far as eating or drinking, if I overdo it blood will commence. So yeah. There's my input.
Posted 11/28/2009 4:28 AM (GMT 0)
Sweetie... what is Humira?  Havent heard of that one yet?

Sweetie31105 said...
I am also unable to take Asacol, and some other drugs, but...the combo of Imuran and Humira brought me into remission. I was on Imuran for a year and a half, and had no problems, and a positive reaction to it. The annoying part though is the blood draws. I had to get my blood drawn every month for my doc to check on to make sure I was still fine with the Imuran.

Posted 11/28/2009 6:12 AM (GMT 0)
Humira is another version of the Anti-TNFs. Same concept as Remi. You here about it more with RA, since that's what is is approved for here in the US.
Posted 11/28/2009 6:22 AM (GMT 0)
Hey SBwithUC :)

Humira is a biogolic medicine in the same Class as Remicade only instead of going in every 8 weeks for an infusion, you give yourself injections at home about every other week. I was trying to get approved for Humira before the Remicade but my insurance wouldn't approve it since it's not been OK'd for use with Ulcerative Colitis yet and Remicade has. That's a shame too because it's acually a cheaper drug for insurance companies to use than Remicade... Go figure.. lol.. It is different enough from Remicade though to allow a switch if Remicade fails you.. a lot of people who failed Remicade had results on Humira and visa-versa....

Hope this info helps.. If the Imuran doesn't seem to work, I'd definately ask your GI about Remicade or Humira... Remicade worked overnight for me.. I decided I didn't want to go down the road of 6-MP or Imuran because I had already been on Steroids for 4 months and didn't want to rely on them for another 3 to 6 months for those drugs to kick in so my GI pushed for Remicade and got it.. :)
Posted 11/28/2009 6:00 PM (GMT 0)
Thanks for the info Susie and Dr-A.  I am liking the idea of an infusion every 8 weeks rather than this home pharmacy I maintain.  It sounds like Remicade really works... It must have pretty bad side effects, huh?  I wonder if Remicade would let me keep my hair?

Posted 11/29/2009 1:26 AM (GMT 0)
Hi and welcome.
One thing it seems you haven't used is rectal meds...I'd encourage you to look into them!
Posted 11/29/2009 5:48 AM (GMT 0)

fruitgirl said...
Hi and welcome.
One thing it seems you haven't used is rectal meds...I'd encourage you to look into them!

I know, I know.  I really have an issue with using the recal meds, however I am at the point now where I need to get over it and just do it.  I was hoping to deal with it through oral meds, but I really need to get better, so whatever works....

Treat from both ends, right?

Posted 11/29/2009 7:09 AM (GMT 0)
from what i have read it sounds like different drugs are used in the US than in australia. my specialist only prescribes prendisolone occasioanaly and only when i am desperate. maybe this is because my symptoms arent as severe as the people who are on pred all the time, they certainly dont seem like mild symptoms to me tho. (lots of blood and pain). maybe ask your doc about mercaptopurine. it has not completely controlled my symptoms but has elliminated the blood and kept my visits to the dunny to about 5 per day. it makes me feel tired tho. you are lucky to have your mum to talk to, i dont feel i can talk to anyone
Posted 11/29/2009 5:40 PM (GMT 0)
Dear SBwithUC-

My case is very similar to yours. I am a 36 y/o. I started bleeding following the 1st prednisone taper and the doc (in Berkeley) put me on Imuran. As he was ramping up the Imuran, he started me again on 2nd round of prednisone to control bleeding. I responded very well with Imuran (100 mg) + Pentasa for ~3 years till 3 weeks ago when I had a flare. That's because I drank alcohol, which is a big trouble maker for me. I think initially I had some problems with back ache, burning eyes etc but eventually they all cleared up.

So, I hope you'll do well on Imuran but do not do anything that'll aggravate the condition -- food/stress.

Now I am struggling to get back to normalcy.

Good luck.
Posted 11/29/2009 6:04 PM (GMT 0)
The issue with Imuran and booze is that both are processed through your liver and can cause liver problems. The most common side effect of the immunosuppressant drugs is liver problems. For this reason it's recommended that you not drink, or drink very sparingly, while taking them.
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