It's been a while since I posted, been going through the ringer. I'm still on IV antibiotics everyday and on oral prednisone for the fifth time. I'm at 80 mg once a day and am holding my breath that the fifth time I'll be able to wean down without a flare. I've been in the hospital for bi lateral pulmonary embolisms and just got out last Tues. They aren't sure where the PE came from, but I now have to add Coumadin therapy for 6 to 9 months on top of the PG adventure. I can't seem to win for losing. The PE was really scary as I'm only 40 and could have easily died if they had been bigger. I've cashed in a whole life policy and hired a lawyer to get my divorce finalized and make out a will for my children. Just things that a near death experience makes you think about.
I saw this great DErm. and she has connections with a professor at John Hopkins that has proposed IVIG therapy and I am in the process of researching it. I think I'm going to start a post on this site to see if anyone has any thoughts on it.
Wishing everyone the best;