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Imuran - what to expect?

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Ulcerative Colitis
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Posted 7/8/2009 7:58 PM (GMT 0)
Hi everyone, I'm about to start taking Imuran for the first time and just wondering what I should expect? Any horrible side effects that will keep me from my everyday work and activities? Or just so-so side effects? I know everybody is different but just curious what the 'average' experience has been. Also wondering if Imuran has ever allowed anybody to stop taking any other meds they are currently taking and just use Imuran alone?

I've been taking Colazal for about the past 10 years and now take Mesalamine enemas once daily. I've been battling on-and-off flares with predictable flares every summer the past 3 years. Take the enemas twice daily during a flare (which is a HUGE pain when I have to be to work at 9am during the week and cannot go home during the day). I'm hoping the Imuran will get me off the other meds which is the goal of trying it out and hopefully preventing these flares.

Thanks much for the advice!
Nikki
Posted 7/8/2009 8:24 PM (GMT 0)
Hi Nikki,
Imuran has worked for me, insofar as my UC appears to be in remission. I tapered off prednisolone whilst increasing Imuran dosage to now 125m per day. To have stopped the bad stomach feeling and the constant visits to the loo is a brilliant feeling but.... All was going well, I think I was probably ok whilst on Pred but everyone said there were bad side effects so must switch to Imuran. I was fine for a while but then noticed my joints started to ache (all of them), I looked into it and found that other users had developed same symptoms. Also you should be wary of overdoing it in the sun, my head really feels sore after sunbathing this weekend. I don't know how to make my joints feel better, but I don't want to go back to the constant stomach cramps. I pay another visit to the hospital in a couple of weeks time so will ask a few more questions. So yes it should help get you off the other medicines and stabilise your condition but be careful of other side-effects.
Posted 7/9/2009 12:45 AM (GMT 0)
I started Imuran when Asacol (six pills a day) wouldn't control the UC and I had to keep going on Prednisone. I'm on 125mg (I think, I'd have to check but I'm pretty sure) and was in remission for a few years. I guess I still am but right now I'm catching a very mild flare before it gets worse. Anyways, it's worked great. No bad side-effects for me. I think it needs like two weeks before it starts fully working so make sure you give it time.

Dynamo1, I hadn't heard of the Imuran causing joint pain. I was diagnosed with arthritis, but they told me the UC was causing it. Hmm. Who knows. Whatever, I'll live with it lol.
Posted 7/9/2009 1:28 AM (GMT 0)
Hi Nikki,
I have a similar medicine regime as you do: Mesalamine enemas (anywhere from twice a week to just three times a month--as needed), Colazol for the past 7 years, and added Imuran 2 years ago.

It took me about a year to find a dose that equalized my health. I will say in periods of high stress I feel the tug of the immune suppressant: fatigue and need for more sleep.

I just had a bad bout of fatigue and other symptoms after a particularly challenging three weeks at work: severe fatigue (lethargy, lack of motivation, etc.), ankle swelling, and joint pain. but my gut health stayed steady, which is why I think it's related to the immune suppressant.

I have learned I need to limit/moderate my alcohol intake, as well, on Imuran in ways I didn't previously.

However, the steady gut-health I have found with Imuran let's me lead a normal life; I'm willing to make some life adjustments: gym for stress relief, make sure I get enough sleep, moderate my alcohol, limit my workoholic tendencies to overwork etc.--all the things that should do regardless of my UC probably...

Since starting Imuran, I've reduced my need for enemas (from 4x/week to occasional) and Colazol from 6 to 3 tabs.
Posted 7/9/2009 3:27 PM (GMT 0)
Hi BNew,

Thanks for all the info, your post really made me feel better about taking the med. I'm getting a PPV (PneumoVax) shot tomorrow before I start the Imuran, per suggestion of my GI. And apparently need to get a flu shot every year now (I've never gotten one before and barely ever get the flu - can't remember last time I did). I barely ever even get colds either so getting a little worried the Imuran will knock me down with colds and possible flu this year.

What is the dosage you take? I see alot of people don't seem to get as sick from 50mg, but higher doses cause alot of side effects. I think he has me on 75mg as he told me to take 1 1/2 pills a day (haven't started them yet). So hoping I don't get tired and nauseated all the time - if there is anything I hate more than the gut pain its being nauseas.

I tend to not get alot of sleep as well, mostly due to work and then going to the gym everyday. The lack of sleep also has to do with getting up at 5am to take the 2nd daily dose of the enema and then trying to sleep for another hour, so being able to even just go down to one enema a day before bed would be a life saver for me!

Nikki
Posted 7/9/2009 11:26 PM (GMT 0)
I never used to get sick, it was actually probably abnormal, as when I did it was horrible. Anyways, now on the Imuran I think I get colds as often as someone with a normal immune system. 75mg shouldn't be bad.
Posted 7/9/2009 11:38 PM (GMT 0)
It was hell for me. Bad bad bruising, nausea, headaches, vomiting. I was okay the first week, got progressively worse during the second and stopped taking it when I became convinced that one more dose would be the end of me.
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