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Crohns Disease


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I don't have a Crohn's DX, but my father and my two brothers do, and one of my brothers seems to have autonomic issues similar to mine...

Both my brothers were on Remicade, but one landed in the hospital with an obstruction and they switched him to Cimzia which seems to be going ok. My other brother was on Remicade, but they now suspect he has developed drug-induced lupus from it, and will probably have to discontinue it.

Before Remicade, they had both been on steroids, imuran, and others. The imuran was really hard for them to take.

My father has had three different bowel resections in the past, but hasn't been on meds for years, and is doing pretty well somehow!

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has your son tried any medication for Crohns?

My son was diagnosed with Crohn's about 8 years ago and has had several treatment regimens over the years: Asacol or Pentasa (2 versions of similar drug), prednisone, 6MP, antibiotics, and now Remicade. He just started the Remicade in January, so we don't know how well that will work. Previous treatments weren't too effective: Despite the meds, he developed bowel obstructions and needed part of his intestine resected when he was just 16. He also had a perianal abscess after starting treatment and, last year, a massive internal hemorrhage. The 6MP also destroyed many of his white blood cells. We're hoping the Remicade will be more effective! I would have liked him to try Remicade earlier, but his doctors were curiously reluctant.

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Im hopeful and interested in the effect of disease modifying medications and their effect on POTS through a reduction in chronic inflammation. Any one noticed anything? Improvement of POTS?

My daughter was ON Remicade when she was dx with POTS. She has had other issues such as costochondritis, back issues, an inflamed toe, etc. while on Remicade as well. So, it was a mystery to me how she could have this other inflammation while on Remicade. I really suspect some connective tissue problem, but they haven't come up with anything. They just keep saying it is "probably" from the inflammatory bowel disease.

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