Quote:
Originally Posted by TinaLou
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
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Tinalou
I understand how frustrating it is to have pain and search for answers without finding them. I too have been searching for an answer. Mostly my pain if from EM. I have tried most all of the things you have but with one exception. Someone mentioned that antihistimines helped (claritin specifically) and I figured it wouldn't hurt to try and to date that has helped me the most. Flares now are almost non existant unless I stand too much or walk too much in which case there is nothing that will help. I don't know if this might help you or not but thought it was worth mentioning. I was really grateful for this tip, it has changed my life. Good luck.