Is there anyone suffering from Eosinophilic fasciitis?

Dani, I’m sorry you have EF. I developed it four years ago. My symptoms began with Morphea and progressed to EF confirmed by muscle biopsy. The skin burning and sensitivity is miserable. Along with EF came several other autoimmune diseases including rheumatoid arthritis. EF affected my GI tract, heart rhythm, and the skin changes. I was on hydroxychloroquine first, then prednisone for two years, methotrexate injections. Then to hydroxychloroquine and mycophenolate. They helped but are no longer effective. Unfortunately higher doses caused my immune system to go so low I’ve had pneumonia, shingles, frequent styes in the last year. Not sure what next. Going through some testing to see what’s going on due to mobility, balance issues and brain fog. I wish you the best and hope for all of us affected by autoimmune conditions.

I was diagnosed with EF after receiving my COVID Vaccine booster shot in 2022. I have been on IVIG home infusions (2 times a month) and Cellcept ever since. The symptoms are under control, but my dermatologist does not know how much longer I will require treatment.

@gila so sorry to hear this. I do hope you find the right effective treatment. I live in Geneva, Switzerland, and I followed here by Prof. Iudici who is very positive that the prednisone and methotrexate will be efficient. But since March this year the mobility is still restricted, and I still suffer from swelling in the morning. Also, the skin on the hands and feet is become red, tightened and thin with occasional bruising. I do hope we all will find some relief! Best wishes

@philipnewbury my symptoms started with swelling in hands and feet following which I underwent various blood tests which showed high Eosinophiles levels. I went back to historic data, as I regularly have blood tests to monitor the hypothyroidism, and noticed that for the first time eosinophiles were high after a covid vaccine, booster and subsequent Covid I caught in 2022. The doctors didn’t find anything worrying even after a second peak in the Eosinophilic count two years later. Then in 2025 the levels went up again and more tests were done because of the swelling. So maybe it is Covid that triggers something, plus the other autoimmune disease I have … My treatment is Prednisone and methotrexate but except for dealing with the swelling to some extent not much improvement in mobility and rigidity.

@dani26

They gave me massive doses of prednisone initially, which helped with the inflammation, but they knew I couldn’t stay on that for long. Methotrexate did nothing. The Octagam infusions coupled with Cellcept work very well, but they are outrageously expensive. Thank God I have good health insurance. I have no doubt my EF was caused by the vaccine.

@philipnewbury I’m also certain Covid vaccines or the virus triggered something that was already a weak spot.. did you do any physiotherapy to relive symptoms? With me the rigidity and stiffness is the worse

@dani26 you’re so welcome. That prednisone is wonderful, but like you say, skin becomes thin, bruise easily and poor healing of wounds. My bones were thinning after two years of it, so my doctor had me wean very slowly off it. I’ll be honest, I do miss it! Best wishes for a full recovery for you!

@philipnewbury
All my autoimmune started after having Covid immunization and having Covid twice despite being vaccinated. I didn’t react to vaccine except an itchy face for a couple minutes . The last Covid infection was the real kick off. I wonder if Covid kicked our immune systems into high gear causing it to attack our own bodies. My rhuematologists says they hear this same story often.

@gila I’ve had hypothyroidism for over 15 years but after a Covid vaccine and nevertheless getting sick with Covid, my eosinophile count started going up.. I am thinking the same. It might ha e triggered another autoimmune response..