I'm a but late getting in on this thread, but Hi to all.....I haven't been to the forum in a long time. Last time I was here, I had been diagnosed with PN and EM, but not many here had info on EM. Glad to see there are others meeting here to share their experiences. I also have a rare form of Vasculitis called Churg Strauss Syndrome, so I am a really "special" case. I am in the Southwest Atlanta area, and have yet to find a good doctor with either a working knowledge or a willingness to learn about EM, so I still deal with flares much of every day. I noticed several of you mentioning Atlanta.....is there a particular doctor here that one or more of you have had success with?
So far I have tried aspirin therapy, blood pressure meds, mag + calc, lyrica (which caused a problem with my vision), and one of the tricyclic (sp ?) meds to no avail. I am very sensitive to medications and have strange reations--usually the opposite of what is desired....so, I have been left with neurontin and a small dose of clonazepam. Trileptal helped the most of any, but a problem with my kidney function arose and it had to be stopped promptly. That was such a disappointment.
Also, have blood testing for JAK2?
Anyways, so glad to know you all are here.
Tina