I Have Been Diagnosed With Eosinophilic Fasciitis

Personal Stories, Advice, and Support 18 People

    For those of you on Facebook,

    I found a great group yesterday. About 60 members, several active that I talked to yesterday. This page won't let me post the link. Search for Eosinophilic Fasciitis Support Group.
    LauraOLeary LauraOLeary
    56-60, F
    Jan 25

    I have been diagnosed with e.

    f for a year now. I can finally pull the skin on the top of my hands and it bounces back!!! it's been 2 years since I last did it!
    KatelynnBradshaw KatelynnBradshaw
    22-25, F
    1 Response Sep 6, 2015

    There is an active Facebook page

    for us. Check out Eosinophilic Fasciitis Support Group. Lots of good discussion there.
    LauraOLeary LauraOLeary
    56-60, F
    1 Response Jan 29

    I was diagnosed in November 2015.

    I was immediately put on Predisone, but since then have heard about LDN-low dose naltrexone. It is used successfully for many autoimmune conditions and has virtually no side effects. Of course, there is no study showing that it is effective for this disease, however, I am...
    schase6 schase6
    66-70, F
    2 Responses Feb 17

    I saw my hematologist Fri

    and he decided to send me for a muscle biopsy and encouraged me to get a 2nd opinion from a rheumatologist. I had blood work done and he says my eosiniphil level went down to 800 from 1500. I'm not sure why. I had a relaxing stress-free weekend with friends a couple weeks...
    wandawoof2015 wandawoof2015
    56-60, F
    Aug 24, 2015

    Hi!! I'm a 38 years old woman.

    I was diagnosed eosinophilic fasciitis in February 2015. I'm treated with: prendisone 18 mg a day, 25 mg metrotrexate at week + folic acid 5 mg, vit D for bones. I removed gluten, milk and milk derivatives from my diet. I practice lymphatic manual drainage and lymphatic...
    claude77 claude77
    36-40, F
    1 Response Sep 4, 2015

    Just Diagnosed With Eosinophilic Fasciitis After Months Of Misdiagnosis

    I am a 39 year old male, and was diagnosed in December of last year...my disease progressed quickly and mostly affected my hands, wrists, fingers, shins and ankles...I was pushed around the system before they figured it out, so I did everything I could to combat it...I large...
    deleted deleted
    26-30
    2 Responses Mar 2, 2011

    My 2nd doctor told me he's pretty sure

    that I have a condition called "eosinophilic fasciitis". I first noticed that my right hand not able to lay flat on the table beginning of this year. Then I went to see hand orthopedics did the MRI of my wrists find very little of inflammation in the joint area. Bones and...
    Kenny2015 Kenny2015
    41-45, M
    3 Responses Sep 27, 2015
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