Re: Vasculitis question

[Guest guest]

Kathleen,

Before I was dx with RP, after going from doctor to doctor for a

number of years, I finally was referred to a hematologist; he did a

biopsy of the lesions I had on my legs and feet and confirmed that

it was vasculitis. Don't know as I ever found out what type of

vasculitis it was though. He referred me to the rheumatologist in

Spokane who made the dx of RP. My lesions were dreadful. They

started out red, hot, very painful; then turned purple and still

sore. When I would get them on my feet I simply could not walk. The

joints were painful as well. Finally they would settle down and new

ones would appear. Prednisone did not seem to help much for this.

It was only after I went on the metho that the vasculitis and RP

settled down. I wouldn't wish vasculitis on anyone. It is awful.

Even now, I still have the scars on my legs from the bouts of

vasculitis. They take forever to heal.

I don't recall what my sed rate was like when I was having these

flares. My platelet level was always very low though.

Wish I could be of more help. Hope your doctor gets to the bottom

of these sores on your head and you can get rid of them.

Love, Marilyn

Hi all!

>

> I was lihow many of you also suffer from vasculitis. I am getting

little sores on my scalp again and my previous rheumy -- whom I

cannot afford for insurance reasons :-( -- said he thought it could

be vasculitis... I did read that people with vasculitis usually

have a high sed rate. Mine has always been low. Do any of you know

anything more or have personal experience? My scalp gets very sore

and I get little sores that are like small ulcers... Any advice

would be appreciated!

>

> Kathleen in Texas

[Guest guest]

Hi Kathleen,

I have Vasculitis. I do get sores on my scalp

but I get them mostly on my legs. They are very painful.

My sed rate is always normal, even when the Vasculitis is flaring.

Sandy

-- Vasculitis question

Hi all!

I was lihow many of you also suffer from vasculitis. I am getting little sores on my scalp again and my previous rheumy -- whom I cannot afford for insurance reasons :-( -- said he thought it could be vasculitis... I did read that people with vasculitis usually have a high sed rate. Mine has always been low. Do any of you know anything more or have personal experience? My scalp gets very sore and I get little sores that are like small ulcers... Any advice would be appreciated!

Kathleen in Texas

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