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