Re: Jo & Susie - New Members

[Guest guest]

Hi Jo and Susie

Welcome to the group. Just jump in anytime and post what you like. We are here for you. We have brochures that we distribute for the foundation. If you would like some Heidi or will send you some. It tells about RP kind of in a nut shell.

I have read where at least one of you has had a biopsy. I have heard that those are not conclusive. We are usually diagnosed by our symptoms. Unfortunately some dr. aren't aware of the RP symptoms and some are not diagnosed as early as others. RP is scary at times but it is treatable even if it isn't curable.

One of you were asking if the ribs had something to do with the RP. Yes! Several of us have rib flares. I think RP effects each of us differently that is why the dr. have such a time treating it. I have had flares in ribs, nose tailbone, wrist, and of course the ears.

You were asking what to expect with RP....that is a good question. I guess it will be whatever it decides it will do. I think in most of our cases it is all in how we deal with it. As for me I have had RP since at least 1993. I lead a fairly normal life..well for me. I work 40 hours a week. Take care of home and family and try to avoid the nasty RP flares as much as possible.

I am on Imuran, and pred. only when I flare. I take 1500 mg of calcium a day and vitamins (several). All in all I do pretty well. Now ask me that when I was first diagnosed and I couldn't tell you the same. It is all in the dr. and how aggressive the are in treating you and/or finding the right combination of meds for your system. Oh yah that is the other problems with RP. We are all different and not one med works the same for each of us.

Well I have just rambled on and on so I better shut up for now. Just wanted you to know that I am glad you found us and hope to hear from you soon.

Lots of LoveGlenda