Posted 7/8/2012 7:35 PM (GMT -6)
Thanks everyone! Its hard explaining to someone who has never had these horrid mouth ulcers how bad they really are, but you all (unfortunately) get it, and for the empathy I am very grateful.
@chughes59, I was very intrigued at your suggestion about Bechet's disease. I am in fact starting Remicade soon, so if it turned out that I have Bechet's, I guess I am on the right track regardless. I do have the mouth sores and skin issues(erythema nodosum), but thankfully none of the eye issues or other features of that disease. I truly feel for your son by the way, it sounds like a horrible and very frustrating disease.
@minniedoty, I do get the bleeding skin cracks at times, I just thought it was a feature of being on a biologic and not healing well, but interesting that you mentioned that. I have been taking several supplements, one of which does have folic acid in it, I will check how much it has and look into taking more.
@SheronS, the magic mouthwash sounds the same as stomatitis cocktail I finally got a rx for--lidocaine, benadryl and maalox. Kind of helps for a bit, I truly can't stand lidocaine, it makes me gag and want to throw up, but thankfully these things are on the way out. I was on Humira last year, unfortunately didn't do anything for me except cause me to get several sinus infections that caused crazy GI upset and eventually we gave that up(I was on it for only about 6 months). Then we tried Cimzia, which saved my colon, but after two months I started getting sinus infections again, then the mouth sores started as well as the skin issues. With no relief for longer than a month and a couple rounds of prednisone and a hospital stay, I just begged my dr for Remicade instead and we are starting it in a couple weeks. Who begs their doc for Remicade anyway? Only me probably.