• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Robm

Eosinophilic Fasciitis

3 posts in this topic

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.

Share this post


Link to post
Share on other sites

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)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now