Re: Welcome Anne

March 8, 2002

Anne, Welcome to this wonderful support group. I hate to think that you

might have RP, but am glad that you found us.

Please ask all the questions you want. this is how we all learn. We are all

different, have different symptoms, and take different meds. Some things

that work for others don't work for the rest. It is sometimes hard to fine a

doctor that is familiar with RP.

It has taken me a while but think i'm on the right track now.

I am 50 and live in California. I never had any health problems until I

turned 40, then all hell broke loose. LOL Thought it was old age since no

doctor could find anything wrong.

I haven't seen Dr. T but there are quite a few in the group that have. I'm

sure they will give you their input. Dr. Jane Buckner is at the Virginia

Mason Reseach Center in Seattle and she is working with our Foundation. She

works in research and she use to see patients on Fridays. You can alway e

mail her and she will respond. There are a few members who see her too. We

do have members in NC and I'm sure they will share their doctors names with

you.

I am taking Biaxin along with pred and Plaquenil for the RP. I believe that

the Biaxin ( an antibiotic) has really worked for me. Not many doctors will

agree with this. There are web sites that you can look at if you are

interested. It is not proven that it helps RP and I just begged enough to

get them prescribed and thought I'd like to take a chance. For me it seems

to be working, but like I said, we are all different. I know that Dr. T uses

Minocin for RP. Connie H in the group can give you all the information you

might need on this subject.

We have a RP Foundation and our goal is to make the public and the medical

professionals more aware of RP. If you would like more information on the

Foundation just let me know. You can visit the site at

Please keep posting and asking questions. You will find a lot of information

in the group. And did I say how wonderful they all are??? LOL

hugs

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