Treatment of Primary Erythromelalgia with Cyclosporine

Read this article in New England Journal of Medicine.

http://www.nejm.org/doi/full/10.1056/NEJM200308213490821

Is anyone taking cyclosporine?

I take enbrel which is also an immunosuppressant for AS, and it definitely effects my EM flares and level of pain and swelling. I was off my enbrel last year during a bad bout of bronchitis for 4 months and my EM was out of control. Once I returned to my normal enbrel regimen, the EM calmed down as well. Its still there and I also take gabapentin to manage it, but its manageable.

This is very interesting to me! I also have AS and have been talking with my rhumatologist about trying an immunosuppression because all the antiflamatories haven’t worked for me. I’ve recently tried to change nerve meds as I don’t really like the drunken side effect of gabapentin at the dose I have to take. But the carbamazepine doesn’t work quite as well during a big flare so now I’m taking both each in smaller doses. I’m definitely going to check this out.

I asked my doctor yesterday about cyclosporine but he said it had too many side defects and wouldn’t give me script. He got snarky and said he’d give me a referrral to the dr who wrote the article. I started laughing he was so rediculous. I said "I can’t travel! ‘’ He’s my EM doc but kinda resistent to anything other than the standard treatment ( gaba or Lyrica).