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Going on Immuran soon. Any advice???

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Posted 9/13/2013 3:03 PM (GMT 0)
I have been on prednisone for 3 months as I was awaiting my parathyroid surgery and now going on immuran. Very scared and feel like I have not tried every thing I should have but finally decided to go for it. Question for all of you who are on 6mp or immuran. What to watch for in terms of side effect? pencriatis, low blood count, lymphoma?

What other medication you take with them? or you just take only immuran?

Also if it worked for you, did you have "tpmt" blood test which said it should work? I am scared to go on this medicine but also worried the next step if it does not work. Thank you.

Posted 9/13/2013 3:24 PM (GMT 0)

Pam,

My Daughter has been on Imuran for several years now. Many Crohn's patients use Imuran or 6MP with very good results. I know that the side effects listed can sound scary. Most people really don't experience any, and do quite well on these.

The one thing to remember about Imuran is, it has to be at the peak therapeautic level to be effective. Usually, your GI will start you on a typical dose, like 100-150mgs per day. After a couple of months, you will need a metabolite test done to determine the level.

The only side effect I would be concerned about is pancreatitis. Some people do get it, but It will generally resolve in a week or so. It would mean that you wouldn't be able to take this drug though.

Posted 9/13/2013 4:09 PM (GMT 0)
Hi Pam, I have been on Imuran for 6 months now. I started w 100 mg. I'm now on 175 mg. At the beginning, I had blood tests done every month; now every 2 months. My GI told me that he might increase the dose to more than 175 mg after he sees the results of the tests to be done at the end of this month.
I take Imuran w a combo of Pentasa and Entocort. But hope it reaches it's therapeutic level to be able to withdraw Entocort.
As for your question regarding the side effects, I too had my worries at the beginning but was told that they usually appear w very high doses. We Crohnies, as far as I know, usually do not exceed a dose of 300 mg.
A piece of advice that I learned at this forum was taking all my doses as a single dose before bedtime (3 tablets and a half) as Imuran used to cause me nausea when I took it 3 times/day.
Good luck :)
Posted 9/13/2013 9:18 PM (GMT 0)
73monte, Thank you for your input. Glad to know that your daughter is doing good with Imuran. I don't know exactly what am scared about? Taking imuran or thinking what if it does not work?

minnietoty, Thank you for your advice. I will make sure, I take it at bedtime.I see that you take Entocort too. My GI wants me to keep taking prednisone while I start. When do you think you will be able to stop Entocort? I hope I can get off prednisone soon.
Posted 9/13/2013 9:49 PM (GMT 0)

No problem Pam,

Unfortunately, the imuran wasn't enough to keep my Daughters disease under control, so she's now on Remicade and Imuran. It's always scary starting a new medication. When we were faced with this combination it made Imuran alone seem like aspirin.

As minnietoty mentioned, the side effect liklihood with Imuran is usually at the extreme doses that they give to transplant patients, not really at the amounts we get with Crohn's.

Tom.

Posted 9/13/2013 11:49 PM (GMT 0)
Hi Pam,
I had a good tmpt test but I still had elevated liver enzymes and needed to discontinue the 6MP (sister drug to Imuran) So I can't take it, but hopefully the comforting news for you is that when I discontinued the medication, my liver enzymes normalized, so no damage was done. I think it's worth a try and I'm not sorry that I tried it. Good luck and I hope it works for you.
Posted 9/14/2013 11:06 PM (GMT 0)
Hi Pam,
My GI told me that he intends to increase Imuran again. I have to undergo tests this month that indicate that Imuran is working effectively. After that he can taper Entocort.
Two months ago, my WBCs went down to 6.9. My GI wasn't that impressed and upped the dose to 175 mg. I don't know what's the optimal dose but it seems we're working for this.
Take care :)
Posted 9/14/2013 11:33 PM (GMT 0)
I have tried Imuran in the past, with not much success. I didn't experience any side effects but it just didn't help with the Chrons at all. But everyone has different results.So good luck.
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