Patient Comments: Eosinophilic Fasciitis (Shulman's Syndrome) - Treatment

Question:

What treatment(s) have you received for eosinophilic fasciitis? Submit Your Comment

Comment from: Eileen, 55-64 Female (Patient) Published: August 15

I started on 60 mg of prednisone for my for eosinophilic fasciitis and after 2 months tapered to 40 for two weeks and now down to 20 mg. I take 2000 mg of Cellcept, an antiviral, and Bactrim to prevent infection. I am also on 1000 mg of calcium. I get blood work monthly. I feel great but my forearms are still hard with some redness. The only side effect is insomnia.

Comment from: Humberto , 45-54 Male (Patient) Published: October 02

I’m 45 years old. I have been struggling with eosinophilic fasciitis since May 2018. Currently I am taking 30 mg of prednisone a day (since July) which helps with inflammation and slow down the disease’s progress, but it is not stopping it. I also take 2.5 mg of methotrexate 5 days a week (for 5 weeks now), but it doesn’t seem to be doing anything for me. I am being treated by a hematologist and a rheumatologist.

Comment from: Sandy, 55-64 Female (Patient) Published: December 20

I had eosinophilic fasciitis in 1980 to 1981 when I was 19 to 20 years old. I was one of the earliest people diagnosed by full thickness skin biopsy in Australia. I was treated with prednisolone and rest for 3 months and it improved. I had the orange peel puckering in the skin on my upper arms and my skin felt hard like wood. It affected my legs too but no puckering of skin on my legs. I also had stiffness in my joints and fatigue. I appear to have had no problems related to this since that time. I was treated by a rheumatologist.

Comment from: 4months, 55-64 Female (Patient) Published: November 17

I am 120 lb and I am taking 60 mg of prednisone daily for eosinophilic fasciitis.

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