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Eosinophilic Fasciitis - White Blotches

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Hi, my name is Aaron and I was diagnosed with Eosinophilic Fasciitis over 1 year ago. I began noticing symptoms approximately 2 years ago. At first, my upper legs and forearms began to stiffin up. The pain continued to increase until I could barely walk. I finally decided to seek medical treatment at this point. After extensive evaluations and a great deal of hard work from my primary care physician, she directed me to a Rheumatologist for further evaluation. At this point, my Eosinophil Count was approximately 17,000 and my forearms and upper legs were still stiffening. My ankles were beginning to stiffen at this point as well. My Rheumatologist had an MRI performed of my upper leg which showed fasciitis. At this point we decided to have a Deep Skin Muscle Biopsy performed to confirm the diagnosis. At the time I lived in Northeastern Pennsylvania and was planning on having the biopsy performed at the University of Penn. After meeting with the surgeon at U Penn we both decided not to have the proceedure performed there because they were not sure exactly how to perform the biopsy. I previously read many stories of individuals who were forced to have 2 or 3 biopsies performed because the first ones were not done correctly. Therefore, I decided to go to Johns Hopkins in Baltimore since they were more knowledgable of this proceedure. The biospy was done correctly in November of 2007 and confirmed Eosinophilic Fasciitis.

 

Afterwards I began Physical Therapy and focused on regaining some of the loss in range of motion. I declined the use of medications my Rheumatologist offered since my Eosinophil Count had since returned to normal and my condition was stable at the time. In time, the pain subsided and my range of motion greatly improved in my legs. I felt as though I was well on my was to full recovery. However, a few months ago my right hand began throbbing. Shortly after, I began noticing white blotches appearing on my right arm. The blotches go from the back of my right hand up to my right shoulder and travel in a straight line. The pain in my hand is constant and I can barely squeeze my hand. A few months ago I began taking Methotrexate 25mg 1 time a week. My condition has not improved and the white blotches are beginning to take on the "orange peel" appearance. I would appreciate any advice anyone can offer who may have experienced these conditions.

 

Thanks for listening,

 

Aaron

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Hello Aaron

 

Firstly welcome to this forum! :) You will find support and understanding because even if someone is not familiar with your illness, I am not, we are all familiar with living with an illness that has fundamentally restructured the way we live our lives.

 

I have actually heard of faciitis as I was diagnosed with this but not EF so I googled it for some info and it sounds unpleasant and well painful. I found nothing about the white blotches so can't actually help with the crux of your query, sorry.

 

Needless to say there is info on this site about EF on the home page, under medical, under skin diseases where there are personal stories about others with your condition, it may be worth reading their experience if you haven't already.

 

No doubt someone will chime in with better info for you. Just remember you're one of us now so we expect updates etc! :lol:

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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Hey Aaron,

 

I too have Eosinophilic Fasciitis. It was just about 2 years ago that my symptoms started to appear. I never experienced the white blotches. My symptoms started out as tingling and numbness in my hands. Initially I thought I was looking at carpal tunnel syndrome.

 

I'm currently rather plateaued in my recovery. I'm much better than I was when I was at my worst, (15 months ago) but can't seem to make it go away.

 

Mike

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Welcome, Aaron and Mike! I hope we can provide some information, as well as support. I'm sorry you needed to find us, but glad that you did.

 

The page on Eosinophilic Fasciitis that Amanda mentioned is here. In one of the articles on Eosinophilic Fasciitis, it states the vitiligo has been reported in EF. This would be the white patches you mention, I believe, but of course your doctor would be the person to confirm this.

 

Are you being closely followed by your rheumatologist, Aaron? This may sound like a 'duh' question :huh:, but have you told him the Methotrexate doesn't seem to be helping? Sometimes a medication will need to be tweaked or even replaced.

 

Wishing you both all the best,


Jeannie McClelland

(Retired) ISN Director of Support Services

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International Scleroderma Network

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Hi Aaron,

 

I'm sorry you are experiencing more symptoms to deal with. Everyone here is great though & if anyone has any ideas I know they'll chime in like ohboyoklahoma mentioned!

 

I do not have EF, but as far as I know, it does cause the orange peel skin & it also can cause the vitiligo (loss of pigment) & can cause claw-like hands (I don't know if your hands are doing that, but maybe that is part of the pain & stiffening?) or maybe carpel-tunnel syndrome (also part of Eosinophilic Fascitis). Anyway, and I also read that eosinophilia "resolves promptly" after treatment with prednisone.

 

I am not a doctor, but I am in school & I read a lot of medical journals. I looked to see if this information is on this website, it is. Once you get to the EF page, scroll down to the links under "Scleroderma & Eosinophilic Fascitis". It is the second link there says the same things. I hope this helps some, it sounds like you have a good primary care physician that cares, that's good!

 

luvbnmom3

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The onset time and diagnosis sound identical to my own, my doctor started me on prednisilone and methotrexate and now I just take 20mg of pred a day, it is coming back afer a 6 mth recession. Swollen ankles and tight hands again I dont know if it will ever go away but there are lots of cases of spontaneous remission so I hope that we are all in this group. My Cell counts are all over the place and I think stress/full time work/even alcohol and excessive exercise all contribute to how EF stabilises. It may lay dormant and with other autoimmune diseases when you are run down it rears its ugly head... I wish you all the best for your treatment and you are not alone and fight this and dont let it get you down!

 

Cheers

 

Rob

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