Posted 11/1/2015 10:10 PM (GMT 0)
Does anyone rely on a specialist other than a gastroenterologist as your primary reference for UC?
I'm a 37yo male living with UC for 20 years now. I started Remicade in 2012 and other than prednisone, it was the first drug to ever work for me. I've had only one distinct flare in the past three years and have been able to live a relatively active life.
But now my problems have expanded beyond the GI tract. Although comparatively minor relative to the past issues, I've been diagnosed with multiple chronic (but manageable so far) skin conditions since starting Remicade: payaderma gangrenosum, leukocytoclastic vasculitis, and palisaded neutrophilic granulomatous dermatitis. I also have assorted pains and maybe arthritis that seem to be related to either the UC or Remicade.
Controlling the GI-related symptoms is my top priority and I've always relied on my gastroenterologist as my primary reference (with questionable results in retrospect). Now I see a gastroenterologist, a dermatologist and an oncologist to administer the Remicade with regularity. Each is only treating their own symptoms of the disease and there is a gap between their areas of expertise leaving me with unanswered questions. It just feels like no one is looking at the big picture or giving the proper attention.
I'll probably schedule an appointment with a rheumatologist to discuss the arthritis and other pains at least, but what I really want is to be sure someone is looking at the overall picture and not just treating one facet of it. Anyone have any experience or advice to share?