Is there anyone suffering from Eosinophilic fasciitis?

Posted by dani26 @dani26, May 21 11:15am

I was diagnosed with Eosinophilic fasciitis after 6-months of swelling and tightness of ankles and hands. Three months ago treatment with Prednisone and Methotrexate was prescribed. The swelling has almost disappeared but the tightness and rigidity of the articulation has not improved. The quality of the skin on my hands. feet, ankles has changed. Movement can be difficult despite stretching, exercising, etc. I would like to hear from anyone who has this rare autoimmune condition to share recovery tips. I also have hypothyroidism and Hashimoto.

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philipnewbury | @philipnewbury | May 23 9:34am

In reply to @dani26 "@philipnewbury I’m also certain Covid vaccines or the virus triggered something that was already a weak..." + (show)

@dani26 I do stretching of my legs and torso every morning and exercise regularly. I believe that staying physically active is part of the cure.

philipnewbury | @philipnewbury | May 23 9:37am

In reply to @gila "@philipnewbury All my autoimmune started after having Covid immunization and having Covid twice despite being vaccinated...." + (show)

@gila There is no question in my mind that the vaccine caused my EF. I never had COVID.

dani26 | @dani26 | May 23 11:52am

In reply to @gila "@dani26 you’re so welcome. That prednisone is wonderful, but like you say, skin becomes thin, bruise..." + (show)

@gila are you taking calcium and vitamin D supplements for the bones?

dani26 | @dani26 | May 23 11:54am

In reply to @philipnewbury "@dani26 I do stretching of my legs and torso every morning and exercise regularly. I believe..." + (show)

@philipnewbury the worrying thing with me is that despite the stretching and exercise daily, there is still stiffness..

Becky, Volunteer Mentor | @becsbuddy | May 23 5:30pm

In reply to @gila "@dani26 you’re so welcome. That prednisone is wonderful, but like you say, skin becomes thin, bruise..." + (show)

@gila You mentioned that your bones were thinning because of the prednisone, so the doctor stopped your taking it. Did the doctor recommend that you have a DEXA scan to decide if you might have osteoporosis? I was on prednisone for about 2 years and did get osteoporosis and was started on a drug to build up my bones. Ask your doctor?!

gila | @gila | May 23 9:10pm

In reply to @dani26 "@gila are you taking calcium and vitamin D supplements for the bones?" + (show)

@dani26
Yes and Reclast yearly infusion

gila | @gila | May 23 9:11pm

In reply to @becsbuddy "@gila You mentioned that your bones were thinning because of the prednisone, so the doctor stopped..." + (show)

@becsbuddy
Hi Becky, yes I get annual dexascans

uri | @uri | Aug 1 5:22pm

I have EF for almost 2 years. It's took them 1 year to diagnose it. First year was a disaster, but I found a great doctor that use microbiotic diet and it's works great! NO SUGAR , NO Milk NO BREAD.... I on Prednisone 4 mg (started with 40) and on methotrexate 12.5.

christinapetersen | @christinapetersen | 4 days ago

Dani, thank you for reaching out and sharing your situation. I was diagnosed 3 months ago via an arm biopsy and physical symptoms, but my symptoms have been around much longer. It took a LONG time to get a correct diagnosis. I'm currently on prednisone and methotrexate injections. Your symptoms sound similar to mind. It started with a lot of swelling but that is much better, but the stiffness and loss of range of motion are about the same. Plus, there are significant side-effects from the meds. It's very discouraging and I wonder if you have found good ways to cope.

dani26 | @dani26 | 4 days ago

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!

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