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Imuran experiences?

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Crohn's Disease
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Posted 1/24/2012 12:24 AM (GMT 0)
Ok so I was diagnosed in '06 and have been mostly on Entocort and Asacol and then switching to Prednisone when flaring really bad. Went to the doctor today because of my recent flare and he prescribed Prednisone for two weeks but then suggested I give Imuran a try. So...thoughts on Imuran? What's your experience?

If it fails...how long have some of you stayed on Entocort? It's been off and on for me for about four years.
Posted 1/24/2012 9:51 PM (GMT 0)
Imuran and 6mp, which are pretty close to identical, are widely and successfully used for Crohns, with many people, including myself, sustained in remission for years on it with no side effects. A small percentage of patients do have suppression of white blood cell count, which must be monitored while on the medication, but most do quite well.
Posted 1/25/2012 6:53 PM (GMT 0)
Thanks!
Posted 1/25/2012 9:04 PM (GMT 0)
It made my liver horribly sick.
Posted 1/27/2012 5:38 AM (GMT 0)
that sucks...anyone else have thoughts to share?
Posted 1/27/2012 5:57 AM (GMT 0)
YOU are making a BIG mistake in relying on prednisone and entocort to manage your Crohn's.

Your doctor is so right! If the Asocol isn't cutting the mustard then it is time to give it some assistance or to move on to better meds.

My med was Pentasa rather than Asacol. And when the Pentasa wasn't quite cutting the mustard we added Imuran. The two have kept me in total remission or symptomatic remission since 2003. The Imuran does need some assistance until it has had time to kick in and take full effect. I didn't want to take pred or entocort so I was on Cipro w/the Imuran the first 6 months. Since then it has been just Imran and Pentasa. It is just the last couple of months I've given some consideration to given the pair a little boost w/a short taper of pred. But only because I got stupid and pushed my luck by discontinuing the Pentasa for a while. The Imuran can't quite seem to do the job all by itself just as the Pentasa can't quite do the job all by itself.

I never had any side effects or problems w/the Imuran. MAYBE a little more tired than usual the first month or so. MAYBE. Other than that my CBC w/Dif & Plat and Hepatic Function Panels have always been great. No problems whatsover. I LOVE my Imuran and Pentasa results and am ever so grateful for these two meds and what they've done and do for me and my Crohn's!

I hope you opt to try it and have as good results as I have had w/it.!!!
Posted 1/27/2012 6:02 AM (GMT 0)
I too was on entocort...after a resection in Oct they put me on immuran. 100mg per day. So far the plus side is I can now leave my house. It really helped with my D episodes (lots) and also helped my pain levels.

The downside so far....terrible muscle fatigue, like stiff. Also I feel nausea most of the day. I have only been on it for maybe a month or so....so still checking my blood every two weeks. But so far it's not as bad as I thought, but time will tell.

I am interested in seeing peoples responses as well. People who have been on it longer than myself. I was very apprehensive to start it, but like you, tried pred, asocol, entocort...ended up with major obstruction in the small bowel. So, I hope you can get some good advice here, and I hope you get relief soon, keep us posted. Kathy
Posted 1/27/2012 7:52 PM (GMT 0)

CrohnieToo said...
YOU are making a BIG mistake in relying on prednisone and entocort to manage your Crohn's.

Your doctor is so right! If the Asocol isn't cutting the mustard then it is time to give it some assistance or to move on to better meds.

I was just doing what he said to do previously, it was never my choice. I think their previous plan was to use steroids for a little bit and then switch to something else. I'm really glad to hear it's worked for you! Very encouraging. Supposedly, I have a 'mild' case so that may be a help. I haven't had the obstructions or aches and pains that I hear about from others here (and boy I know how lucky I am in that regard), just the urgent diarrhea with some blood when flaring (and side effects of steroids of course). Thanks for the reply!
Posted 1/27/2012 7:56 PM (GMT 0)
Also, I did try Remicade but had a reaction to it - not sure how serious. I felt light headed and my blood pressure rose so we stopped. (It was one of those deals where they come to your house to do it - I don't remember why, probably cheaper that way - so there wasn't any medical equipment around.)
Posted 1/28/2012 2:59 AM (GMT 0)
I started taking Imuran in October of 2011 and has been making me really nauseous. Just today, my GI told me to stop taking it because my liver enzymes were high. This was my personal experience but it is different for everyone.
Posted 1/28/2012 3:34 AM (GMT 0)
I developed Pancreatitis and was in the hospital for 4 days, that was preceeded by an infection that turned into Sepsis / kidney failure which landed me in the hospital for 5 days, 2 in the ICU. I think it was all a severe allergic reaction, as I had only been on Imuran 8 days before I got ill.
Posted 1/28/2012 3:41 AM (GMT 0)
well I don't like the sound of that
Posted 1/28/2012 2:59 PM (GMT 0)
They start you out on Imuran w/frequent blood tests. Like weekly at first. I don't remember the exact regimen now its been so many years. U of M was using a Prometheus test that reported the efficacy level and hepatic function risk level for you as an individual so that the Imuran dosage is specific to you. The usual dosage is based on weight but then modified as necessary for your specific level of response. You might want to ask just what this doctor's regimen is when scripting Imuran. What tests he relies on, how frequent the tests are run, etc. The dosage should be high enough to be effective but low enough to avoid any real risk to your liver and pancreas.
Posted 1/28/2012 7:01 PM (GMT 0)
Yeah they're talking to my insurance company about whether that Promethius test is covered. Thanks for the reply, fellow Michigander .
Posted 1/28/2012 8:55 PM (GMT 0)
I've been on it for about 2 1/2 years now, with absolutely zero problems. Granted, my diagnosis is UC, but... I take a pretty high dose, I think- I weigh about 110lbs, & am on 150mgs/day. I think the Imuran has done more to help me over the long-term than any other med. It made me sleepy & spacy at first, so I take my entire dose before bed. And over time, your body adjusts also, so that tiredness will fade. It's a med you can start & stop with no ill effects, no tapering, etc. So if you start it & have to stop, or decide you want to quit, you can just up & stop taking it.
Posted 1/28/2012 10:52 PM (GMT 0)
I was taking 6MP. We did the tmpt Prometheus test in advance and it looked like I was a good candidate for it, but within two weeks of taking 6MP my liver enzymes elevated. I have been off the 6MP for around two weeks now and my enzymes are still elevated. For those of you who have had this complication, how long did it take for your blood work to return to normal after you stopped the drug?
Posted 2/7/2012 8:43 PM (GMT 0)
So apparently Blue Cross won't cover the Prometheus test - arrrghhh!!! I guess it costs $300-$400? I'm supposed to call them to follow up and see if they won't make an exception (if I can get through to a human, that is). Anyone else have to go through this? Any advice on what to say?
Posted 2/8/2012 8:20 PM (GMT 0)
I guess it depends on the BC/BS policy as there was never a question or hesitation on their part when we were running the Prometheus test for me.
Posted 2/8/2012 9:21 PM (GMT 0)
Blue Cross of Michigan covered my Prometheus tmpt test. My results indicated I was a good candidate for the 6MP, but my liver enzymes elevated anyway....so I don't know how helpful the test results really were! Another option is to start the Imuran or 6MP at a lower dose, and then take blood tests every week for awhile and see how you react. Good luck with your decision. I wish it would have worked for me, but it wasn't in the cards for me. It has helped many many people though.
Posted 2/9/2012 12:55 AM (GMT 0)
I didn't get past about 4 days on Imuran. Nausea, headache and then a really itchy rash. Turns out I was allergic to it. My GI put me on a really low dose of 6MP after that. (Low incase I had another reaction) but no rash. have to admit I still felt very nauseas and my for some reason my hair fell out quite a bit. After a few months the nausea eased though :)
Posted 2/9/2012 7:57 AM (GMT 0)
Hi there,

I love my Immuran!!!  I've been on it for 10 years now.  Wouldn't give it up for anything.  Was the only thing that controlled the big 'd'.  The only thing to reiterate is get your blood work done regularily!!  Google it if you haven't because there are a lot of side effects...liver, lymphoma etc.  It gave me my life.  I forgot what it was like to actually socialize.  Best of luck and I truly hope it works for you as well as it has worked for me....Lili

Posted 2/9/2012 12:16 PM (GMT 0)
Goshes, Gumby, I didn't know or forgot that you were a fellow Michigander! I'm up near Saginaw.

I started Imuran thru the U of M immunosuppressant monitoring program and despite they ordered the Prometheus test they ran a blood test the day I started it, then a progression of weekly, monthly and then quarterly blood draws. I think another Prometheus was done at one month, 3 months, then 6 months. Its been since 2003 so I don't remember exactly.
Posted 2/9/2012 1:59 PM (GMT 0)
I was on Imuran for a year after my resection surgery. It did nothing for me...my CD came back with a vengence. I also had weird side effects like memory loss and confusion. Everyone is different and responds to drugs differently. I always seem to be in the 1% of people that have said side effects..lol.
I personally, i your situation, would give it a go and see how it does for u. If it doesn't work, there are many other drugs out there that can be tried.
Good Luck!
-Jeny
Posted 2/9/2012 2:20 PM (GMT 0)
One more thing....when I got my statement from the Prometheus labs, it said on it that if insurance doesn't cover, that they have a discount available, so look into that too.
Posted 2/25/2012 2:51 AM (GMT 0)
Actually, I was wrong, Blue Cross covers 80% after I pay a $1,000 or so deductible. So, same deal as with the colonoscopy. Haven't done it yet, I'm seeing the doc on March 6 and we'll talk about it some more then. Thanks for the responses.
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