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Going to start Imuran

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Ulcerative Colitis
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Posted 5/5/2012 12:48 AM (GMT 0)
So I went back to Mayo today, saw the doc who's pretty senior there and he's putting me on Imuran. I've never taken it before - I've only taken 5-ASAs for the past 18 years and mostly did fine on them till now. I've been having alot of abdominal pain, gas, not normal BMs (but only 2-3 a day) but no bleeding. He said it sounds like I'm going back into a flare (I just got off Prednisone a month ago). He's also putting me on Prednisone again but only 20mg for 5days, then 15 for a week, then 10 for 2 weeks, 5mg for 2, then done.

So my question is - do most people take Imuran and have no side effects?  He said there aren't too many side effects with it. I was offered it in the past when I had similar symptoms (also no bleeding though) but back then they made you get blood tests weekly to test your liver which sounded scary to me.  Sounds like now they just test something called your TPMF which tells how you'll react to the drug, then you only need less frequent liver tests. Interesting how things change!

Anyway, I've avoided Imuran like the plague since I really never have much bleeding. Before last January it had been 10 years without it. So I'm a little worried about going on it. Are there any bad side effects to be aware of?  Thanks for any advice anybody can give me.

Posted 5/5/2012 1:30 AM (GMT 0)
I have been on imuran for 3 1/2 months now. The good news is, I have had no side effects from it. The bad news is that it hasn't worked for me yet. We are waiting on bloodwork to see if enough med is in my system. I know it works great for many people! Good luck with it!
Posted 5/5/2012 3:10 AM (GMT 0)
MNBeachgal

I'm almost in the same boat as you. I'm about to start 6mp and I am very nervous. I was med free for many years with only minor sxs the whole time. Diagnosed in 1999. I was very sick then but did great for the past 10 years. Had a flare two years ago, took Prednisone and it worked well. This time I've been bleeding since mid July and on my 2nd round of Prednisone. Can't take mesalamine and have avoided these drugs like the plague too. I am very concerned about going on 6mp but I need to stop the inflammation. I am hoping I don't get the nausea people talk about. Did you fill the Rx? I did but it's just sitting there staring at me waiting for me to take it. I have to do something soon because I'm tapering the Prednisone and I need to go in the right direction for once. I am also on LDN and was hoping that would be enough. Hard to tell until you get down lower on the Prednisone. LDN works better without the Prednisone.

No real advice for you except I saw we have something in common. Diagnosed around the same time, lots of remission, current flare and afraid of Imuran/6mp.

Best to you in whatever you decide.
Posted 5/5/2012 3:40 AM (GMT 0)
Seasons,

I haven't started taking the Imuran yet. I have to wait for the TPMF blood test results which won't be in till mid-next week. I do start back on 20mg of Prednisone tomorrow though.  Luckily I'm not bleeding - which probably makes me even more unsure about taking Imuran.  But my doctor said he was sure I was starting up a flare again now that I've been off Prednisone for a month (I was on it for about 2 months). He felt if I waited I'd for sure just keep feeling worse and the Colazal and mesalamine enema isn't doing the trick anymore.  I didn't know it could cause nausea - I hope I don't get that as well!  I asked him about hair loss as I've read people on here mentioning that. I already have problems with hair loss on and off and even have a shed right now from coming off Prednisone.  But he said even though some people do get it you can get it with the 5-ASA drugs too and it isn't common.  He said something like Prednisone works very fast but also have alot of bad side effects, while Imuran takes a little while to work but has very little side effects and is better to take long term.

I guess I trust him since he is one of the GI head doctors at Mayo - I'm still worried though! 

Go ahead and start the Imuran - you can always stop if you have bad side effects, right? That is what I always try to remember - you can always stop the drug if it doesn't work for you and try to find something else that works.

Posted 5/5/2012 3:40 AM (GMT 0)
Hi -

I have been on Imuran for 19 months. No side effects at all for me and my blood work has been perfect. I can take it with or without food anytime of the day and it does not cause any stomach upset for me. It is the only drug that has put me in remission and kept me there.

Good Luck!
Posted 5/5/2012 12:21 PM (GMT 0)
I've been on Imuran for almost 7 years. No side effects. I have bloodwork done every 3 months. It has always come back a-ok. I recently had my dosage increased so I have been doing prometheus tests every 3 months.

If I remember correctly it took about 3 months to really start working for me.
Posted 5/5/2012 3:49 PM (GMT 0)
I haven't had too many side effects, aside from having to get frequent blood work to monitor my WBC. Good luck with it, I hope you're able to get into a longterm remission.
Posted 5/5/2012 5:32 PM (GMT 0)
Thanks everybody for all the posts!  Sometimes you read a few no-so-great stories on a drug and its easy to get worked up about taking it!  It helps to know you can take it long-term with no side effects. I really never have side effects with meds, except the Prednisone.  My WBC was up to normal when I got tested this week but C-Reactive Protein was high which is why he though I must have inflamation even without bleeding.  Well that and the horrible abdominal pains, not normal BMs and extreme gas (and nausea!).  I hope this works for me - I had a good long run with Colazal and wish I could stick with that, but he said its common for meds to stop working after long-term use and long-term disease. 

Someday they will be able to grow us all new colons, right?  That is what my brother always tells me (and he's had the J-pouch for over 15 years now). 

Posted 5/6/2012 2:43 AM (GMT 0)
MNBeachgal

Yes lets do this together :) I started with 1/2 a pill of 6mp tonight. I know I'm a wimp but it took courage for me. I hate hate the idea of this med in my system. Still scared but moving on....

Keep in touch, we are in a similar boat.
Posted 5/7/2012 12:58 AM (GMT 0)
I've been on Imuran for 4 months. Queasy & super tired when I hit the 1 month point - it lasted for 4-6 weeks and all is well now. Best of luck to you!
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