Re: Jammie

[Guest guest]

Jammie, I'm glad that you found this wonderful group. I hope we can answer

some of your questions for you. I know this must all be scarey for you and

your mom. Please, just keep asking all the questions you want. This is how

we all learn.

You must remember the RP is different for all of us. It sounds like your mom

might have a form of vasculitis. There are many in the group that do. This

goes with the RP. I don't have this so i can't be of much help for you. RP

has affected my ears,nose, ribs and heart valves.

Once we are on the right medications for us ( and here we are all different

too) the RP is controlable. We have many who are in remission. RP is not a

death sentence. You just need to find the right doctors and the right

combination of medications and usually the RP is controlable.

Have you checked out the Hopkins site on vasculitis? They have a lot of

information there and you might be able to see if this is what your mom has.

It is at.

http://vasculitis.med.jhu.edu

Please keep the questions coming and keep us updated.

hugs

[Guest guest]

Jammie, I know you must feel lost with your mom feeling so bad. I'm so glad

that you found us. Please have her check the drug numbers that some have

sent. Prenisone is the first line drug they usually prescribe. It isn't

expensive, so maybe she could start with that. What do the doctors want her

on? She has to have something to get better. If you need any more help,

please let us know. We will help you find a way to get her medicine. She

needs something to get to feeling better.

You just vent anytime you want. There is usually someone around.LOL Give

your mom a hug and let her know that she has over 200 people here for her.

hugs