Ulcer Preventing Drugs?

[NerdyChristina]

So I’m getting IVIG over two days each month. This has been enormously beneficial...for three weeks or so. The week prior to my next two infusions? GI ulcers, anal ulcers, and oh so fun vaginal ulcers, too. The doctors are suggesting we add an oral drug into the mix. The concern is that I may be forming narrower portions of intestines, as well as losing the elasticity of my anus. I can 110% confirm my anus isn’t pleased with any bowel movements. My intestines also hurt as does my colon.

I’m getting another GI emptying study, scan, and endoscopy. Thankfully no colonoscopy as they’re concerned about irritating the already irritable situation. My celiac artery is almost fully blocked off, so we know that going into everything. The bleeding appears to be mostly confined to the colon.

Thanks! I know how to handle mouth ulcers because I had those for years. This GI stuff has been ongoing as well but I guess having obvious flares makes it harder since it’ll feel okay then horrendous then gradually get better before the cycle repeats.

[OpsDave70]

Would Plaquenil be an option for ulcers down below? It helped me a lot. Where are you located? I was told that my insurance wouldn’t cover IVIG, but I think it could put me into remission or at least hold back the rough stuff. Thanks!!

[belle623]

Hi Christina,

Oh wow you are strong. Keep us posted on how you are doing. Have you tried Imuran with Omeprozile and Ranitidine?

Hugs

Ash

[duke22]

May I ask what drug they want to try you on. Also my son was on IVIG and it was a miracle for two 5 week cycles and for some reason after that it didnt work. He was so happy. His stomach was worse but it seemed like that anyway when he had the mouth ulcer flair (which came in a 5 week cycle that went from mildly to horrendous) for our insurance to cover the ivig we had to show he had immune deficiency. They gave him the pneumonia shot and counted the titers (or something) and decided he wasnt making the titers so he wasnt getting the ivig for behcets he was getting it for immune deficiency for insurance. We were not cheating the insurance because he really was immune deficient. My point I am trying to get to is I read behcets patients should not get pneumonia shot like we did mdedge.com/chestphysician/a.... He had a terrible reaction from that. Not allergic but just sick on top of behcets.you can read the article unfortunately we didnt know