Jon T: Eosinophilic Fasciitis

Hi, my name is Jon, and I was recently diagnosed with Eosinophilic Fasciitis. I am a thirty-eight-year-old fireman, and I am married, without children.

This whole thing started months ago, when I denied the fact that there was something wrong with me, after noticing that my legs were really swollen, and discolored. I had just had a surgery on my shoulder following a Brazilian Jiu Jitsu injury, and noticed my arms were becoming more and more swollen as well.

Near the end of my recovery of the shoulder surgery, I began to have problems making a fist in both hands. My wife convinced me to see my doctor about it. After six weeks of nearly every test I had heard of, and being seen by four doctors, I had a biopsy of my calf, and got started on prednisone 80mg/day, that afternoon.

The rheumatologist confirmed the diagnosis to me over the phone the night of the biopsy. I have since been on the prednisone for the past week, and have not noticed any change as of yet. I also do not have the appetite I used to have which is good for me, as I am a bigger fellow.

I guess the reason I wanted to post my story is that I understand that this is a rare disease, and after using the internet to research the disease, I am stumped as to the possibility for me to return to normal duties at work, and what the normal prognosis for someone with this disease can expect?

I am looking for information, any and all that can help me understand how and what I need to do to get better. Sorry for all the "I" 's in this post, don't mean to sound self centered. Let me know if you can help, or if I can help you in anyway.

~Update 11-26-07~

Well, sadly I am not any better, in fact I am worse. The disease has spread throughout my entire body, making getting out of a chair, bed, or doing just about anything, very difficult. Add to that, the fatigue, and sometimes not being able to put in a full eight hours at work, and you have a truly life altering situation.

Unfortunately, my job is now at stake, and I am most likely going to lose it, as I am unable to perform my firefighting duties with this disease and I don't qualify for disability, so I guess I will slip thru the cracks.

The prednisone hasn't worked at all, and I have decreased that to 30mg/day, but I have increased the dose of Methotrexate to 25mg, injected once weekly into my fat. No change with this drug either, and it's been a total of two and a half months on this medication.

I am not sure what I am going to do, but I know one thing, my patience is wearing thin, and I am feeling down more often than I ever have in my life. I don't feel sorry for myself, just mad that I can't do any of the things that I enjoyed in life, prior to this diagnosis. Well, that's all, praying for a miracle.