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Eosinophilic Fasciitis: Looking to connect with others
Autoimmune Diseases | Last Active: Aug 8, 2023 | Replies (34)Comment receiving replies
Hello.
My name is Maria and I started having severe muscle pains in June 2022, after weeks of debating with my PCP what it could be labs were done and C-reactive protein was elevated showing some kind of inflammation. Make a long story I was then seen by a rheumatologist via video and she diagnosed me with PMR. I was on low dose of prednisone for a few weeks. Muscle pain in my legs started to diminish but tightness in my forearms appeared to a point that my ROM was so limited. I have the same issues with my legs and also my abdominal area is so tight that it is often hard to breath and move, especially after eating. I am now on high dose of prednisone and was told that the next medication should be Methotrexate. I have a CT scan scheduled to see what if there is anything else going on with the abdominal area. I was wondering what kind of treatments others have gone through and what the results were. A biopsy is scheduled to confirm EOF. My labs have improved almost to a normal level. The symptoms of EOF are still very prominent though.
I appreciate any feedback.
Sincerely,
Maria
Replies to "Hello. My name is Maria and I started having severe muscle pains in June 2022, after..."
Maria,
I first developed symptoms in April, 2022, right after my second (Moderna) Covid booster. The first three doctors I saw had no idea what it was. Finally, I saw a rheumatologist who recognized the groove sign. He sent me for a biopsy which confirmed that I had EF. My symptoms were very similar to yours. I was put on 60 mg of prednisone and methotrexate initially.
I was able to get in to see Dr. Ruth Ann Vleugels at MGH Brigham Dermatology Clinic in Boston in July. She switched me to 48 mg/day of methylprednisolone and started me on 3g/day of CellCept and Solu-Medrol infusions (1 gram per week for 6 weeks). She also started me on IVIG (Octagam), 2 infusions per month. I have had four months of IVIG infusions so far, and my symptoms have improved significantly. She discontinued the methotrexate, and is also weening me off the methylprednisolone. (I'm currently alternating between 8 mg and 4 mg daily).
I don't know where you are geographically, but if there is any way you can get in to see Dr. Vleugels, I highly recommend it. She treats many patients with EF and has a well-established program for treatment.
I am also very interested in finding out if anyone else developed EF soon after their Covid booster. It could be purely coincidental, but in my case, the symptoms came on within days, and there were no other unusual events in my life around that time.
Phil
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Hi Maria! I was diagnosed with EF in March 2022 and had similar symptoms. Do have have a groove signal? That’s unique to EF.
I’ve been on prednisone since April and the doctors have prescribed methotrexate, hydroquinone, cell Celt, light therapy and ivig infusions. I tried it all and had to weigh quality of life. Anyway, right now I’m on low dose prednisone and monthly ivig infusions.
I still have inflammation in both arms and legs.
If you want to reach out, please don’t hesitate to email me. I have found that this is a lonely journey and not many people understand how EF impacts daily and quality of life.
Take care,
Roberta