I used to be very active on this board but haven't stopped by in some time. After 6 or so years of being sick, I was diagnosed with sarc by a medialstinal biopsy. The results state "non caseating granulomas consistent with sarcoidosis. I thought this was a DEFINITE diagnoses.
I was getting remicade infusions every 4 weeks and treating myself with cannabis as I am a legal patient in the state of Mi. I was doing ok, still had daily issue's but I managed much better than I had before.
We believe I am now building up antibodies to the remicade. I thought I kept getting a really bad flu since I know it lowers my immune system. The last time I got this "flu" was two days after my last infusion and I needed to be hospitalized due to dehydration and extreme diarrhea.
I got to talk to a LOT of doctors. A couple of them are questioning my sarcoidosis diagnoses saying there are other things that can show as non caseating granuloma's.
I'm not the text book sarkie, mine started with miscarriages, extreme joint pain and swelling, chronic uveitis, migraines, neuropathy, blood clots, gi issue's, etc. I never really had any cough, might have been due to all the pain pills I was on as they can suppress a cough though.
While I was just in the hospital they did both an endoscopy and a colonscopy. The endoscopy showed chronic gastritis which I already expected. They took biopsies from both ends and are sending them out for special testing.
They are concerned about a very rare bacteria called whipple. Apparently this test can take a while and it isn't in yet. I was dazed and confused in the hospital and they did say there were other things that can present with non caseating granuloma's but they really wouldn't elaborate much yet until more tests come back.
I do have a very good sarc doctor, probably the best in the state of Mi. He was on vacation but I will see him tomorrow to see if some of these other tests are in or not.
I was wondering if anyone else has been told they might not have sarc after all or if anyone knows what else could be diagnosed by non caseating granuloma's. They are testing again for celiac and chrons disease. Any info on that or if you have experienced an allergic reaction to remicade, how that presented itself, would be greatly appreciated!