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Eosinophilic Fasciitis


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#1 Andrewcooper

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Posted 29 March 2011 - 11:29 AM

Hi Everyone

I am looking for some help, I have recently been diagnosed with Eosinophilic Fasciitis after a year and a half of various scans and biopsies.

I have been told by my Doctor that there is no known cause or treatment. I have been told that I am rare because in most cases it only affects people in one or two parts of their body, but I have it in many parts of my body. I have been told that steroids are a course of treatment that may help, I have been on and off high dosages of steroids for over a year now with no signs of improvment.

#2 Shelley Ensz

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Posted 29 March 2011 - 11:51 AM

Hi Andrew,

Welcome to Sclero Forums! I'm sorry you have Eosinophilic Fasciitis (EF) and send my best wishes to you. EF is a very rare disease, and is in the family of scleroderma-like illnesses. However it is generally considered to be a bit more treatable than systemic sclerosis (scleroderma). I'm sorry that your illness hasn't responded to treatment, at least, not yet. Has your doctor discussed the possibility of methotrexate, or other options, with you, yet?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 29 March 2011 - 12:57 PM

Hi Andrew,

Welcome to these Forums!

I'm very sorry to hear that you are suffering with Eosinophilic Fasciitis and that your doctor doesn't appear to think that there is any treatment.

However, it would certainly be worth consulting a rheumatologist who has specialised knowledge of this very rare disease and we have a link here to Scleroderma specialists which I hope might be able help you.

Do please post again and let us know if there is any improvement.

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#4 Jeannie McClelland

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Posted 29 March 2011 - 01:07 PM

Hi Andrew,

I'm just popping in to welcome you. I think we might have one or two members who have EF and hopefully they'll see your post and let you know their experiences. If there is anything we can do to help with issues such as living with a chronic illness or tips for dealing with pain and/or fatigue, just ask.

Best wishes,
Jeannie McClelland
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#5 Sweet

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Posted 29 March 2011 - 01:43 PM

Hi Andrew, welcome!

I see the others have given you a couple of really good links, I hope you find them helpful.

Again, welcome :)
Warm and gentle hugs,

Pamela
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#6 Amanda Thorpe

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Posted 29 March 2011 - 05:03 PM

Hello Andrew

Welcome to the forums! I don't know much about EF but I do know about living with a chronic illness having diffuse scleroderma. Please let us know if we can help you live with yours.

Take care and keep posting.
Amanda Thorpe
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#7 Andrewcooper

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Posted 30 March 2011 - 02:04 PM

Thank you all for your replies.

I have been seeing a rheumatologist since the end of last year. I am now starting a course of 60mg steriods and azathioprine a day for 3 months until my next check up. Hopefully I may get some improvement. I am going to look at the links that you have given me and I will post how I get on.

Thanks again :)

#8 kmbhoya2000

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Posted 09 May 2011 - 02:11 PM

Hi Andrew,

I was diagnosed with Eosinophilic Fasciitis 18 years ago, when I was 15. I started on very high doses of prednisone along with NSAIDs. I am still on them to this day, along with plaquenil, flexeril, and I just started Enbrel about 5 weeks ago. I have not followed a "typical" path, although it seems to be so rare they almost don't know what "typical" is!! But my bloodwork and symptoms have floated between Lupus, EF and scleroderma through the years. The last 2 years have been especially difficult, and I am going through testing again to check on internal organs, the GI tract now being the focus as I have been having trouble swallowing as well as stomach problems...

My advice is to try to stay active. I exercise everyday even though it hurts sometimes, and I may get more sore, but it really helps me mentally and physically. I try to make my body stronger to try to ward off injuries that could cause setbacks...

I wish you luck, please feel free to PM me any questions or concerns, I have been dealing with EF for a long time...

Kathleen

#9 kmbhoya2000

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Posted 09 May 2011 - 03:19 PM

Andrew, I also forgot to mention, that my Eosinophilic Fasciitis has affected basically my entire body. By the time I got a diagnosis, I had claw hands, my arms were as hard as a rock, I couldn't walk down stairs because I could not get my joints to move to manage the stairs, and it was creeping to my torso. I have very sore back and shoulders, with muscle spasms.

Kathleen

#10 Chopper

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Posted 10 May 2011 - 09:49 AM

Hello, Andrew! Adding my 'welcome' as well! That is something I had never heard of, but as the previous posts show, it's nice there's info available here and others to offer their support! Best wishes and keep posting!
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#11 desertstarlover

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Posted 12 June 2013 - 07:20 PM

I have been diagnosed with EF and it has affected my entire body, except my face, palms and soles. I have been treated with high dose prednisone and clobetasol cream for six months and they seem to have had no effect - have not helped.

 

I am starting on a course of cyclosporine A and and hoping for the best! 

 

If you are still on this forum, let us know how you are and what treatments you have tried!



#12 Joelf

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Posted 13 June 2013 - 06:00 AM

Hi Desertstarlover,

 

Welcome to these forums!

 

I'm sorry to hear that you've also been diagnosed with EF and that so far the treatment you've received has been unsuccessful.

 

I do hope that you will have a more positive result from the course of cyclosporine A and please do keep posting and let us know how you get on with it.

 

Kind regards,


Jo Frowde
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#13 Shelley Ensz

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Posted 13 June 2013 - 08:31 AM

Hi Desertstarlover,

 

Welcome to Sclero Forums!  I'm sorry you have Eosinophilic Fasciitis, and that so far the treatments haven't been successful.  I really hope the cyclosporine A helps.

 

Please feel free to pitch in with friendship and support with the whole gang here; you don't need to stay confined to the EF thread. We are all here to share support for scleroderma plus for related illnesses, like EF, and related symptoms, too.  It does help newbies if you consistently clarify you have EF (spell it out for them, too, if you are outside of an EF thread), whenever you are discussing your symptoms, because it helps to raise awareness of the disease.

 

Some doctors still wonder if EF isn't simply a variant of scleroderma, they are that closely related. It usually onsets after strenuous activity, such as long bike rides or marathons. It is usually treatable with corticosteroids (as opposed to scleroderma, where it is best to avoid steroids whenever possible).

 

How long did it take from onset, until diagnosis, for you?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#14 amberjolie

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Posted 15 June 2013 - 02:31 PM

Hi Andrew,

 

I might have EF - I never did the muscle biopsy because I was told that the treatment would be the same regardless of what sort of myositis I've got, so I'm not sure what kind it is.

 

I tried prednisone for a short while, and I thought it was helping a bit (it was at least decreasing my CPK levels, or whatever it is that is for myositis, I can't remember!), but went off it, and am currently on azathioprine.   So far that doesn't seem to be doing much (only been on it for a couple of months), and in general the muscle weakness and stiffness isn't getting better.

 

I hope you're able to find something that works for you! 



#15 Kim32K

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Posted 07 January 2015 - 01:59 PM

Hi everybody

I see that the posts are old but sure I'll try anyway.

 

I was officially diagnosed with EF this week after bloods & biopsy . It's taken nearly 2 years to get this far, all the time my symptoms worsening . I'm in Ireland, and I think there's literally a handful of people here with it.

 

Mine affects hands, wrists, forearms, feet & lower legs . I was started on steroids in September while waiting on a biopsy to be done,I was getting too bad . Anyway I've had a good improvement but as my dose was reduced I got bad again . So the steroids have been increased again & plaquenil has been added.  Hopefully things will continue to improve, along with physiotherapy.

 

It was initially thought it was sclero , because I have the classic tight shiny skin on my hands, but now I have the sunken veins too, the 'groove sign', it's pretty well ruined my career as a paramedic, but my grip is too bad to lift anything heavy . Hopefully things continue to improve !