Eosinophilic Fasciitis

I was recently diagnosed with Eosniophilic Fasciitis, a rare autoimmune disease. Because it is so rare, I can't talk to someone who has this! My doctor has only diagnosed 4 patients with this disease. While it is not life-threatening (except in rare cases) it is not a lot of fun and the symptoms will take from 2-3 years to go away. there is no known cause nor no known prevention. I would really to talk with someone else who has this "stuff" as I call it.

bbear66 bbear66
66-70, F
2 Responses Mar 12, 2009

good to hear from youMWinME...am going to type fast! My computer keeps kicking me off the Internet so I wil just say I have not forgotten you and will "chat" more when my computer gets fixed which hopefully will be soon. I've tried to respond 3 times and have gotten kicked off.. not fun. glad you are feeling better. this is not a f un disease; i'm into my third year and hopefully the last one. neuroopathy has been a big problem along with severe skin problems and the clawlike hands and hair loss. am going to sign off for now but will be back when t he computer gets fixed...take care..peace and blessings...bbear66

Hello bbear,
It’s been a few years since you posted. How well have you recovered from Eosinophilic Fasciitis? Are you back to normal yet? What was the treatment that worked best for you?

I was diagnosed with Eosinophilic Fasciitis late in 2008. I've been on Prednisone since. My dosage started at 60 mg and am now down to 6mg. I was extremely affected with limited motion in my limbs at the time of diagnosis. I now lead a pretty normal life but the condition still exists and I'm hopeful that someday it will go away completely. I've only met one other person with EF online. He was not responding to medication and I have since lost contact with him.

It’s seven years since you were diagnosed with Eosinophilic Fasciitis. Have you completely recovered now? Was your treatment just the prednisone or did you receive other meds? What do you think helped the most in your recovery?