Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Eosinophilic Fasciitis

  • Please log in to reply
2 replies to this topic

#1 Robm



  • Members
  • Pip
  • 3 posts

Posted 01 September 2009 - 12:14 AM

I cannot believe the lack of data on the internet about this condition. I am beginning to wander if it actually exists!?!? Hi, my name is Robert and I live in Australia. I will tell you about how I was mis-diagnosed, what I was treated with and how to best manage this condition in my experience after living with this disease for 2.5 years. I am 33 years old and after 15 years of weight training at the gym, I was bitten on the hand on new years eve 2006. Initially my hand swelled and my ankles swelled the joint pain seemed to travel up my arm and down my other arm to my other hand over months. A doctor put me on a course of anti-biotics as the bite could not be identified. Several months passed and the joint pain had traveled down my legs to my ankles and feet. On waking I could hardly walk down the stairs but as the day went on the joints got better. I didn't know what was wrong with me and it appeared either did the medical profession. I began to loose weight quickly and fatigue and depression seemed to appear from no-where. I was referred to a rheumoatologist my a general practitioner who had no idea what it was and referred me to an infectious disease physician. I luckily had a friend who recommended another rheumatologist and I went for a 2nd opinion 6 months after the initial onset of symptoms. He quickly sent me for a biopsy of the muscle from my calf and I was confirmed with EF. He initiated treatment of 25mg prednisilone daily and oral methotrexate 20mg week. I also took vitamin c+d and an iron supplement daily. The drugs seemed to work quite quickly but the disease was not giving up without a fight. My blood work was all over the shop with 12 months of drug therapy things had returned to normal, I was back in the gym and feeling good. My work and relationship had suffered due to the abnormal mood swings I experienced (maybe from the pred) and I had become an insomniac. I took myself off the drugs and was ok for 3 months, the EF has returned and I am back on the initial drug therapy to control this evil condition. I take fish oil and pump lots of good vitamins into me daily I am back to normal apart from taking the meds every day. I still have trouble making a fist and I avoid shaking peoples hands as even light pressure feels crashing and light grazes on my ankles are quite painful. I can live with this - theresa lot of worse things out there that you can get! All I can say is stay strong and don't let this thing take over your life, stay positive and you will get through this - don't let it become a disability. As Jenza_gurl has indicated exercise is very important ironically with this disease. Get a good doctor, stretch and enjoy life.

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 01 September 2009 - 04:09 AM

Hello Robm

Welcome to the forum although I am sorry it's because of eosinophilic fasciitis. I have scleroderma and regular fasciitis, needless to say the regular kind does not cause me as much grief as yours does.

We do have information on the forum about eosinophilic fasciitis which includes personal stories which may be of interest to you.

Hope this helps and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#3 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 01 September 2009 - 08:45 AM


It's good to see you found this forum.
With the attitude you seem to have, you are doing a good thing for yourself!

Keep up the great work and thank you for sharing with us, about your illness!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)