Re: welcome Ethel

[Guest guest]

Ethel, welcome to the best support group ever. Believe me, we all know how

scary the news of RP can be. We have all been there. First of all, let me

reassure you that a lot of literature you will read about RP is old and not

up to date. No, RP is not curable, but it is treatable. We have many that

are in remission and most of us are doing okay on our medications. If

treated promptly and with the right medication, your life will be normal.

The problem with RP is that it affects all of us in different ways and we are

all on a lot of different medications. What works for one does not work for

another. It takes time to get the right medication for you. The standard

med is prednisone. The drug we all love to hate. LOL Some of us are off

pred completely, some of us take pred and other medications (Imuran,

methotrexate, Dapsone, Plaquenil, Cytoxin, Remicade, etc) along with the

pred. Some just take the Imuran or other drug.

RP can effect different parts of the body, not just the ears and nose as most

literature states.

A Rheumatologist or ENT usually are the primary Drs. for RP. If you have a

good rheumy, then that's half the battle.

In my case, my ears, nose and ribs were the first things that flared. Now I

have found out it has affected my heart valve. I am on Pred and Plaquenil

right now. I seem to be doing fine. I'm slowly decreasing my dose of

Prednisone. I was originally on 80mg (1999) and have now come down to 8 mg.

I am 50 and live in California.

We have over 200 members, so please ask all the questions you want. YOu will

find a vast amount of knowledge in this group. Please keep posting. I have

not had the problems you are describing. I'm sure someone else in the group

can help you.

Looking forward to getting to know you better.

hugs