Anybody out there have vasculitis of any kind? what type of treatment have you received?

Question

Just curious how many people have this uncommon disease and what treatment you have received or are receiving? Have you managed to get it into remission at any point? Did it return? I have leukocytoclastic vasculitis only involving the skin but interested in anyone's response with any kind of vasculitis. Did they ever figure out what caused it? Any and all info someone has will be appreciated. Thanks

Answer 1

I have vasculitis for the past 2-3 years. I think I got an allergic reaction to a medication I was taking. I just woke up one morning and started limping. I went to my doctor and had blood work done and basically it showed lots of imflamation. I went to a RH Specialist and had a MRI and he also sent me to a Neurologist. Basically I was put on Predisone. I still had symptoms even though my inflamation was controlled. I stopped seeing him because he wanted to put me on lots of muscle relaxers and I still had pain but nothing like what I had in the beginning. I can't walk up stairs because it flares up the inflamation in my legs. I also have it in my arms.

Answer 2

There are many different kinds of vasculitis. It is an autoimmune condition(same as Rheumatoid Arthritis or Lupus) where your own immune system attacks your body as if it was a germ or foreign object. It is treated most often with steroids to suppress the immune system. In more difficult cases chemotherapy medications are used. I have know 3 people to have suffered from this and all three did go into remission however one of those people does tend to have periodic exacerbation's that cause her to need to resume steroids (prednisone). You should be seeing a Rheumatologist and regular blood work to get control of this condition. Good Luck!

Answer 3

My son-in-law has it in the brain. He's been getting chemo for the last year and a half along with prednisone. It's horrible, especially in the brain. See good link below for more info.