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Imuran and remicade??

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Ulcerative Colitis
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Posted 5/28/2012 2:34 PM (GMT 0)
My 20 year old son has such severe UC he's going to have to add imuran to the remicade. He's had 3 remicade infusions now and tho he's well he's still going to the loo 6/8 times per day and his bowel isn't healing. Next thing is surgery which he is desperate to avoid so he is going to take the 2. Anyone else doing this and how are you? Are you pleased you took this step?
Also I looked at adding LDN to the mix but dont know if it's safe to???
Any help much appreciated. Thanks
Posted 5/28/2012 2:42 PM (GMT 0)
I'm sorry to hear that he is having so much trouble. It makes me sad when I hear this in someone so young. I don't know about with both drugs but I am on 6mp and my integrative MD says to keep on the LDN, it works differently. I know Skip from Skip's pharmacy says that if you are going to take 6mp or Imuran why bother taking LDN, but my doc says to take the 2. I don't know about Remicaide though.....
Posted 5/28/2012 3:43 PM (GMT 0)
I started Imuran in mid-March and Remicade in early May. I haven't been on Remicade long enough to see its full effects but Imuran made a huge difference for me. I almost wish I hadn't started Remicade since the Imuran was working well but my dr wanted to treat aggressively to get complete bowel healing. Imuran can have some side-effects but I haven't experienced any. In fact, this is the healthiest that I have felt since getting UC.

There is an increased risk of contracting a rare lymphoma when taking both medications, particularly for young males. The risk is higher than that of the general population but it is still very low- less than 1%.

You said that your son does not want surgery. I hope that he can avoid it but it may be helpful for him to read some personal accounts of people who have had the J-pouch procedure. Everything that I have read has been overwhelmingly positive and has changed my perspective on it.
Posted 5/28/2012 3:54 PM (GMT 0)
Thanks for your reply. Yes, I had heard about a higher incidence of lymphoma in young males but our consultant at St Marks in London says that now they have had a longer time to view the results it is an even spread through all ages and sexes?
She also said that surgery can cause fertility problems and as my son is only 20 she was keen to try the medical route first. Thanks for the advice. Hope you continue to stay well - my son feels well on the remicade just goes to the loo too much!
Posted 5/28/2012 4:03 PM (GMT 0)
When ik started remi I also started 6mp, which is a lot like immuran. However it didn't help me for long. I hope it does work out for your son. But I agree that it might be a good idea to go ahead and get a surgical consult, just in case. Being caught in emergency surgery without any plans could be very bad. I've had surgery, I'm happy I did. Its not for everyone, and if wants to avoid it then I hope he can and achieves a greaf remission! I didn't use ldn but I've heard a lot of talk on here about it. Good luck
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