Is there anyone suffering from Eosinophilic fasciitis?

Christina, indeed yours is a similar situation! The most visible side effect of the prednisone and the methotrexate is my hair. It has become very thin and dry, some hair loss as well, but not dramatic. My medication started in March with 30 mg of prednisone gradually decreasing and currently on 2.5 mg every other day. No more swelling, but still significant tightness in ankles and calves. Going down stairs is still not without effort. I do exercise 3-4 times a week working on flexibility, strength to keep the muscle tone, a bit of cardio. I try to power walk couple of times a week but it’s quite tiring. Life is almost getting back to normal. I am due for a check up with my rheumatologist mid-November. Until then, prednisone every other day in the low dose and methotrexate weekly. Daily Calcium + Vit. D, folic acid the day after the methotrexate, biotin to help my hair issues. I started seeing a physiotherapist who performs some sort of gentle massage to make the tissues move. Lymphatic drainage does not have great effect. I did some rounds fascia-specific massages which bring relief for the few hours after but nothing more significant. What helps tremendously is the stretching exercises daily. Whenever you have a spare moment. Some lunges, squats, heel raises, anything that feels good. Now it looks like there will be light at the head of the tunnel. Few months ago when the swelling was terrible, i was wondering if I would ever be able to wear normal shoes again! Patience! You’ll get there!

@dani26

Thank you for sharing your story. I have a similar condition in conjunction with systemic sclerosis or scleroderma (skin thickening). The treatment is the same - Methotrexate. What is your weekly dose of Methotrexate?

@dani26

Thank you for sharing your story. I have a similar condition in conjunction with systemic sclerosis or scleroderma (skin thickening). The treatment is the same - Methotrexate. What is your weekly dose of Methotrexate?

@altabiznet for how long have you had this condition? Did it start with swelling of the extremities?

@dani26

I have my SSC condition for the past 4 years now. I also have Hashimoto's with hypothyroidism for the past 15 years. Scleroderma started with mild joint swelling, some stiffness in the joints, getting tired easy, some fatigue, unexplained food allergies or GI discomfort (red meat, fish, spices, fried food). My primary care doc is familiar with SSC and he ordered SCL-70 antibody test along with a full panel for autoimmune and connective tissue disease. I tested positive for SCL-70. First year was relatively easy with mild changes. Then skin started developing discolorations and changes like in fasciitis. I was put on Methotrexate 25 mg/weekly (hard to tolerate) which worked on joints but not on skin. Then Actemra (worked but hard to tolerate due to GI cramps), then Humira (works a little), now back on Methotrexate 12.5 mg, which is working slowly, and switching to Rituximab soon. Joints swelling with synovitis and fasciitis are my main challenges to mobility.

Hope, Methotrexate works for you. It takes some time to make it work.