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New member and first day on Imuran

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Crohn's Disease
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Posted 9/18/2011 11:37 PM (GMT 0)
Hi everyone, today is day one on Imuran after trying to keep my Crohns under control with Pentasa and diet and I have to tell you I am terrified of this medication.  I go for iron IV infusions once a month to keep my iron levels up. 

Hoping that someone has some good news stories with Imuran.

Take care!

Posted 9/19/2011 12:30 AM (GMT 0)
I've been on it since I think the beginning of May and I have had no side effects at all except maybe a little hairshedding when I forget my folic acid.

I'm also on Humira and I haven't any issues with having a weaken immune system. Best of luck!
Posted 9/19/2011 1:03 AM (GMT 0)
I was scared of it too. Unfortunately for me I was apparently allergic to it and after taking it for a week I had developed Sepsis and landed in the hospital for a week. After getting out I went back on the med and 3 days later was back in the hospital for another 4 days with Pancreatitis, which can happen with Imuran. My GI has been practicing for 34 years and I was only the 3rd person to develop such a reaction.

After getting off of it I've switched to Pentasa, so far no ill effects from it. My Crohn's related symptoms are sporadic, but I wouldn't say I'm in remission.

I realize my story is hardly a good story, but I'm also the esception rather than the rule. From what I read on this site a lot of people do well with it.
Posted 9/19/2011 12:12 PM (GMT 0)
I have been on Imuran for years and have had no side effects. 
Posted 9/19/2011 2:03 PM (GMT 0)
We have multiple members on this med and most have been on it and some in remission for over 10+ years. Make sure you take it with food and take some additional folic acid as it can cause some hair shedding. Good luck!
Posted 9/19/2011 2:31 PM (GMT 0)
Heya,

I just started immuran about 1.5 months ago and am having no side effects from the drug itself.

I won't know for sure how well it's working till I get off the pred, tapering now. WIll keep ya posted when I am pred free.

Still though, nothing to report about the immuran that is scary for me.

Thanks

Jon

Posted 9/19/2011 2:34 PM (GMT 0)
Thank you all.  I took my first dose last night after dinner and seemed to be ok.  I think I was anticipating the sky falling.....!!!  tongue   But it didn't.  I am going to go and get some folic acid today and start that as well as continue with my probotics.

Looking forward to hearing more good stories!

Kelly

Posted 9/19/2011 8:05 PM (GMT 0)
My daughter is supposed to start Imuran on Thursday. I am hoping she is not allergic to it or doesn't have any serious side effects. She just came out of surgery last week and is still healing from the resection. She's only 5 do you think I should look into extra folic acid for her too? I don't want her to start losing her hair because of this medication, it's already very fine and thin.
Posted 9/19/2011 8:28 PM (GMT 0)
I've been on imuran on and off for at least 10 years. Never had any side effects, unless I tried to increase my dosage. It works well for a lot of people. It's hard to say how well it works for me, since I still have issues, though.

katiesmommy, I think a good children's multi-vitamin (with folic acid) and some probiotics might be helpful for her. Check with her GI.
Posted 9/19/2011 8:32 PM (GMT 0)
I was on it for a couple of years, starting with when I was also on Remicade. Sometimes we have to make quality of life choices vs. medication side effects. I had to stop both drugs due to side effects but both were helping my CD. Good luck to you.
Posted 9/20/2011 10:19 AM (GMT 0)
I have been on Imuran for 3 months now -- gradually walked up the dose every couple of weeks. After the 3rd step-up in dose, I noticed nausea and headaches creeping in. I had bloodwork done every couple of weeks in the beginning to make sure all was well.... and it was, so my doc prescribed Zofran for the nausea -- that stuff was a life saver. I've been on my full dose for 4+ weeks now and the side effects have all but stopped. Many people told me that my body would adjust and it would get better and they were right. My labs last week showed signs that the Imuran is starting to do its job, so we're all very hopeful. :) My Crohn's symptoms have been getting better as well.

I was terrified to start taking this medication, so much so that I signed myself up for a couple of drug trials to avoid my doctor putting me on it. Finally after the trials were unsuccessful, I gave in. If you have side effects like I did, have faith that most likely it will pass. What seemed to make all the difference for me was splitting my dose. I have to take 4 pills a day and my doctor told me I could take 2 in the morning and 2 in the evening. What a difference! Might want to see if your doctor is ok with that.

Best of luck to you and keep us posted on your progress! :)
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