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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)
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@philipnewbury I’m also certain Covid vaccines or the virus triggered something that was already a weak spot.. did you do any physiotherapy to relive symptoms? With me the rigidity and stiffness is the worse

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@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.

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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)
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@philipnewbury
All my autoimmune started after having Covid immunization and having Covid twice despite being vaccinated. I didn’t react to vaccine except an itchy face for a couple minutes . The last Covid infection was the real kick off. I wonder if Covid kicked our immune systems into high gear causing it to attack our own bodies. My rhuematologists says they hear this same story often.

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

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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)
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@dani26 you’re so welcome. That prednisone is wonderful, but like you say, skin becomes thin, bruise easily and poor healing of wounds. My bones were thinning after two years of it, so my doctor had me wean very slowly off it. I’ll be honest, I do miss it! Best wishes for a full recovery for you!

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

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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)
Profile picture for philipnewbury @philipnewbury

@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.

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

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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)
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@dani26 you’re so welcome. That prednisone is wonderful, but like you say, skin becomes thin, bruise easily and poor healing of wounds. My bones were thinning after two years of it, so my doctor had me wean very slowly off it. I’ll be honest, I do miss it! Best wishes for a full recovery for you!

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@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?!

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gila | @gila | May 23 9:10pm
In reply to @dani26 "@gila are you taking calcium and vitamin D supplements for the bones?" + (show)
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@gila are you taking calcium and vitamin D supplements for the bones?

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@dani26
Yes and Reclast yearly infusion

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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)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@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?!

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@becsbuddy
Hi Becky, yes I get annual dexascans

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