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Eosinophilic Fasciitis: Looking to connect with others
Autoimmune Diseases | Last Active: Aug 8, 2023 | Replies (34)Comment receiving replies
Phil,
Thank you so much for the information. I live in California and have Kaiser Insurance; it really feels like my rheumatologist is shooting in the dark. I will make note of the treatments that you are receiving and suggest to my doctor to look into that. I have to say my symptoms are not as bad as they were a few weeks ago.
I had a J&J booster 8 months prior to the onset of symptoms and had Pfizer booster in October but I cannot say that the symptoms got worse, they were bad already if that makes any sense.
Thank you again and I hope that your symptoms have been improving .
Maria
Replies to "Phil, Thank you so much for the information. I live in California and have Kaiser Insurance;..."
Hi Maria,
I noticed you mentioned living in California and you feel like you rheumatologist is "shooting in the dark". I am in NorCal and was recently diagnosed with EF and highly recommend my rheumatologist, Dr Victoria Marie Kelly (she is part of the Stanford Heatlh Network). Her wait time for an initial visit is quite length (3-4 months) but she is super attentive and thorough. In her decade long career, she has helped ~8-10 other patients EF.
I'm still in the early stages of treatment (currently: 60mg prednisone for 14 days) but so far, my improvement in quality of life and reduction in constant debilitating pain has been exponential. For a time (pretreatment), I started to wonder if I could even remember what it was like to not be in constant pain or be fully independent with my daily tasks (yaeh dark dramatic thoughts lol). I've recently started seeing a PT to try to regain my range of motion and mobility. Not sure what the future holds and if I'll ever be 100%, but for now I feel optimistic 🙂
Bev
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Hello...... I was diagnosed with EF in late March of 2022 and have tried several different treatments. I have been receiving monthly IVIG monthly infusions that are not longer working. My doctors just prescribed Acterma injections, which I have not started because of issues with my insurance. Will you all please share your treatment and what has worked for you?
Thank you,
Roberta