hi guys- anyone ever talk with their docs about
this? Get this- I was diagnosed with an extremely rare autoimmune disorder, pemphigus foliaceous, in 1989. Got it under control with steroids, went into remission & have been disease free since then. With the exception of a minor flare-up during pregnancy, & a flare that started about
6 weks ago. I saw my derm this past week- he gave me a topical steroid, did blood work, & we are holding off on any systemic steroid unless things go awry. My current flare is quite mild. ANYWAY- while talking with him, we started to discuss the immunology aspect- he's pretty interested in the fact that I have 2 autoimmune disorders. The drugs I am on for UC are also used to treat pemphigus- & just like with UC, they don't work for everyone. There's really no way to tell whom they're going to work for. We started to discuss the IvIg therapy, which is used with great success for pemphigus. We also talked about
possibly switching Remicade for IvIg & seeing what happens. The bottom line is this- I have an appt. with my GI this coming week, just a follow-up, & my derm asked me to have my GI contact him. He wants to discuss my UC, my meds, & shop around the possibility of IvIg. I would not be a guinea pig under most cirucmstances- however, my derm is one of, if not THE, best doctors in the country for pemphigus. People literally come from all over the world to see him, & he is at the forefront of research in the field. I'm extremely lucky to have found him- the ppl. in the waiting room with me were from Atlants, GA! Plus he literally saved my life back in '89. Soooo... it may be cool! I would give the IvIg a try in a heartbeat- it's prohibitively expensive, makes Remicade look like a bottle of store-brand buffered aspirin, cost-wise. But my insurance covers it in full...!!! We'll see what happens- I'll let you all know the outcome, of course. Apparently, it's stem cell stuff & things like this, the IvIg, for the future drug treaments in autoimmune disease. Just wondering if any of you have ever talked about
it with your docs, whether it be for UC or any other autoimmune disorder.
diagnosed with UC '02
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07