vasculitis | Arthritis Information

Has anyone here had any experinece with vasculitis. My mother passed away at the age of 61 from a sudden onset of this disease. She first lost sight in one of her eyes and then all of her bodily functions began to shut down. She passed away within 2 months of her diagnosis. That was 15 year ago...........I've googled the subject of course, but just wondering if anyone here had any personal experience with the disease. Thanks.
Mary

Nana, I am so sorry to hear about your mother...such a sudden onset and rapid progression is very scary.

My 14-yr-old stepson has vasculitis in the eyes as a result of Stevens-Johnson syndrome ten years earlier. He's been seeing a specialist in Boston and taking 8 different eyedrops each day, including one that is experimental (he's the first person on the planet to try it in this form). He's also on one of the chemo/DMARD drugs. The pain seems to be less, but he's not sure how much the medications are helping him. The next step would be stem cell surgery, so we're hoping it doesn't get that far.

Nana, are you worried you might be getting vasculitis? I know it can be a concern for those of us with RA.

I was diagnosed with vasculitis many years ago but certainly nothing as serious as your dear mother. My disease has been controlled by Imuran and at its worst, I had small "blood dots" on my hands and especially around my fingernails and sometimes toenails that were very painful. My RD said that the Remicade would help control the Vasculitis and at this point, I have to believe him since I've really cut back on the Imuran. Innerglow - yes, I do worry that I might also have vasculitis in the future, espicially since I have RA. My mother did not have any form of arthritis - it was a real shock. I have asked the doctor and he says there is no reason to think that one day I might have the same thing happen to me.............but what else is a doctor going to tell you.

Binge.........thanks for the information. I will be on the look out for any small red dots. I did see that when I looked the desease up. The other day I had a sharp pain in my left eye, then a few days later the same short, sharp pain and all I could think of was that this was the first symptom my mother had. I think I will make an appointment with an opthomologist? just to be sure things are all right. Thanks for listening.

Mary,

I have vasculitis but am doing well. There are a number of different types and the prognosis within each type is variable as well as it is a somewhat unpredictable disease from person to person. I'm sorry your mother passed away so young. I take immuran but have not been on it long enough to know how effective it is. Vasculitis can now often be controlled well with medications.

It's good to just get any changes checked out so that if you have problems it will be caught early. I have had the eye pain but was told it was no concern. After that I developed hypertropia. I still wonder if there was a connection. I went to an optomotrist and probably should have gone to an optomotrist instead. My eyes seem to be fine now though.

Laker