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Can't take Imuran and Remicade due to Family History of Lymphoma... Now what????

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Ulcerative Colitis
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Posted 3/28/2011 6:51 PM (GMT 0)
Today, we found out that our 12 year old son might have some new medication options available to him, as sulfasalazine is no longer doing the trick. They are Imuran and Remicade. His real father has Non-Hodgkins Lymphoma, so these medications and the family history might cause a greater risk of cancer. Now what are we gonna do? shakehead
Posted 3/28/2011 8:46 PM (GMT 0)
What other meds has he tried? How about rectal enemas? Did his doctor suggest the Imuran and Remicade knowing his biological Father has Lymphoma? I'm just wondering what the doctor's suggestions were.

Posted 3/28/2011 9:26 PM (GMT 0)
It sounds like surgery is the only other option if he can't take the other things.  There are quite a few young people who have had the j-pouch done over on the ostomy board (one little boy was 5).  It sounds like a scary and awful for your child to have to go through this, but the ones who have had it done all have said they are so glad to have their lives back and are sorry they didn't do it earlier.  If he is really sick, you don't want him to have to suffer through these very important years.  Come on over to the ostomy board when you are ready. 

What does his GI say?  Even with the cancer risk, does the GI still want him to try Remicade and Imuran?

Posted 3/30/2011 1:38 PM (GMT 0)
Thank you both for your response posts! :) He is definitely not at the surgery state yet, as he is no where near as sick as others. But you are right, quality of life is key! The Dr. does not know yet about the father's medical history...we ourselves just recently found out. So.... when we see the Dr. again on the 14th, we will be filling him in on what we have found out. He just made it very clear that he must know of the cancer history before considering the two meds. He has not tried the rectal enemas. I will do some research on those today. Thank you! And I will keep you posted...
Posted 3/30/2011 3:07 PM (GMT 0)
Why not try the fecal transplant and/or worm therapy that have worked for many people? Nothing to lose.
Posted 3/30/2011 4:21 PM (GMT 0)
 

Jumping from sulfasalazine to Imuran seems like a big step.  I'm surprised other treatments wouldn't be tried first.

Posted 3/30/2011 7:26 PM (GMT 0)
have you considered low dose naltrexone? I have been taking it for 1.5 months, brought me out of a flare. incredibly minimal side effects, and is actually used for many people with cancer as well (immune modulator) which could be an added benefit with family history. Check out the Jill Smith studies at penn state. Small trials for crohns. She just finished a trial with children. Worth looking into. Best of luck...
Posted 3/30/2011 11:33 PM (GMT 0)
Have you son try the SC diet.
Posted 3/30/2011 11:36 PM (GMT 0)
If meds can't get into child into a state of remission, try alternative means if possible.
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