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Any young males out there on remicade, imuran, and/or both? Scared of lymphoma risks.

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Posted 10/5/2013 1:39 AM (GMT 0)
Hey all,

I'm a 21 year old male, new college grad, recently diagnosed with pancolitis. I spent a lot of this summer in the hospital and had the scare of my life. I was severe, steroid refractory, and close to surgery when I had my first infusion of remicade in-hospital, which put me into an instant (near)remission. I've since had a few more infusions and have been doing really well; down to 1 BM a day with very occasional blood. However, my GI (who has been incredibly kind and helpful) would like to add Imuran to the regimen in a few days because of the now demonstrated effectiveness of combo therapy.

I am again very scared, mainly of the risks associated with this potential decision, as I understand that although the risk is low in the general population nearly all of the associated HSTCL cases were in young males. I was wondering if there were any other younger guys here who are taking either of these drugs, especially both as a combo, and what your experiences have been?

Thank you to everyone; I've tried researching this like crazy but haven't been able to find too many similar anecdotes.
Posted 10/5/2013 2:43 AM (GMT 0)
As you said the odds of lymphoma are very low. The average person on no meds at all has a 0.02% chance of any form of lymphoma. Add in immunosuppressive meds (imuran, 6mp, aza) and the odds increase to 0.04%. Take both immunosuppressive and remicade and the odds become 0.06%. You are correct that the only patients who got a specific form of lymphoma in the studies were adolescent males. Go to slide 25 on page 10 of the document that follows as it talks more about those cases:

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 10/5/2013 3:07 AM (GMT 0)
Define young. nono

Anyway, I just wanted to make sure you pay attention to your reactions if you start Imuran. Like you, I was intolerant of mesalamine but also 6MP (which Imuran is derived from). I was diagnosed in my early 30's.[code]
Posted 10/5/2013 4:23 AM (GMT 0)
I'm 28 right now, nearly 29. I was on 6mp (other names: purinethol, mercaptopurine) for about 6 years between the ages of 18 and 24-25. I never really worried about the lymphoma risk much with that medicine.

However, I tried to steer clear of Remicade for a few years before admitting my need for it in January 2012. I am still on this medicine. I have had some unique issues with body aches and swollen tonsils that after more than a year we are just beginning to hone down on. My ear-nose-throat doctor says the tonsil does not look like it is a case of cancer, thankfully. We're probably going to be doing a tonsillectomy here this fall and we'll know more by then.

The whole risk of these meds is scary. However, my doctor seemed very comfortable with me on this therapy. It's a tough spot, because although surgery does eliminate the colon, there still can be issues. So... I try to stay in remission and hope for new findings to come out soon that help us all.
Posted 10/5/2013 4:24 AM (GMT 0)
**I should add that the issues with surgery include: possible pouchitis, frequent restroom trips, and general risks of something happening from surgery. It's enough for me to choose Remicade for now.
Posted 10/5/2013 6:11 AM (GMT 0)
I am a 30 year old male...I still consider that young LOL, just got diagnosed in August with severe UC. Ended up in the hospital, started original treatment using Asacol, Prednisone, and Azathioprine (Immunosuppressive). Was released from hospital, ended up back in there 1.5 weeks later. Medication was not working quickly or efficient enough. GI told me he wanted to start Remicade, told me of the risks, but said he believed it would help greatly.

Started it 2 days later on Thursday night. When my family came and saw me Friday, they said I looked like a different person. It definitely has been working. You can see in my signature below the meds I am currently taking, which include the Immunosuppressive. I do not feel any side effects except for the fact I am improving day by day. I was scared too, especially the more I read up on lupus and lymphoma as possible long term side effects. But, like iPoop stated, the chance is still very low. To me, it is worth the risk just because of how positive my body has reacted to it.
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