Re: Cindy H

April 9, 2002

,

I have Behcets Disease. It's a very rare autoimmune disease, even more rare than PM. I also have MCTD, Fibromyalgia and PM. When one disease flares it seems that they all join in.

Behcets is a vascular disease that thins the epithelial linings. Mucus membranes are usually affected first and ulcers in mouth, genital regions, gastrointestinal tract, eyes, etc. are common. Later in the disease, blood vessels are thinned and sometimes aneurysms may develop. The vasculitis that has developed in my feet and legs, esp. my left foot, is in the peripheral vessels and turned the foot dark purple in 1998. My foot looked like it had been scalded and burned and ulcers developed. I took me over a year before I could get them under control. They were awful. I still have to be careful with my legs and keep them up part of the day. When I am starting to flare, my feet turn purple. Other areas of my body are also affected. I have vasculitis on my face and arms. Lesions have been cultured and biopsied. Nothing grows on cultures, but vasculitis can be seen in the biopsies,

I am treated for Behcets with colchicine and acylovir for the mouth ulcers, erythromycin cream for my eyes, trental and cytoxan infusions every three weeks. I also take several drugs that are for the PM and general autoimmune diseases. I've been on prednisone daily since 1990, plaquanil, embrel, and others since 1994.

, I hope that you don't have vasculitis. Coping with myositis is enough without other problems. My thoughts and prayers are with you. It's hard when you are waiting for answers. Sue

April 10, 2002

Hi sue. Thank you for answering my question about the vasculitis. I

do have some type of it but the doctor does not know yet if its from

the muscle disease, or another autoimmune disorder. Like you i am

struggling with more than one problem. Even on high predisone i am

still losing weight. I can't afford to lose no more, but my esophgus

and tummy muscles are not working well. It does sound as if your

plate has overflowed with problems. My new wheel chair has an order

for a full tilt, where your legs go up higher than your but so the

blood can flow back. I am not able to leave my legs in a down

position for very long any more or even try to stand very long

because they turn a pretty purple. Now I have to watch for ulcers. Is

that like what you get. I also have the raynauds problem, but lately

my hands have been hot and swollen, usually they are bluish and cold.

Maybe its the predisone. I have little white spots on my lips, have

you ever had that? They don't hurt just there. The 17th i go to

rheumy hopefully my biopsie results are in. I also have a spine MRI

this thursday, because my weakness is getting worse. Seems like a

major down hill slide since december, but i will take it one day at a

time. It seems like that is all we can do.Sometimes don't you feel

like saying alright enough is enough already? Please take care and

thank you for all the information.

H

April 10, 2002