I finally got to see my GI for my follow-up since my colonoscopy, it has also been several months since my last visit. The bad news is that I MAY be developing antiobodies to the Remicade, which may be the cause of my mouth sores and bladder/pelvic pain. The worse news is that he really believes my joint pain is not caused by this, that it is UC Arthritis. He said the areas I have pain are classic UC Arthritis spots exactly. (wrists, hands, knees and ankles). :(
The good news- First off, my 2 week flare-up seems to have subsided, I think! My doctor is very optimistic about the Prograf. My colon is 100% beautiful. My only ulceration is about 1/4 and inch deep still, but is curling? around the edges, a sign it is trying to heal. Since it is 2 inches from my anus, (sorry TMI) rectal meds should help (though I have tried them all over the years with no help!) I am gonna try the Proctofoam HC again. Other sort of good news is that if I can't take the Remicade, I will start Humira. I am not happy about injecting myself, but it does save me the pain of appointments and IVs and finding babysitters. Ironically, I have gotten used to it though and look at it as one of the few chances I have to relax. The Humira should help the arthritis if I have antibodies to the Remicade. So, more meds to take... One more Remicade infusion to "see what happens," oh boy. I am still having trouble accepting the fact that I have arthritis at 27!
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica