Re: more about symptoms-Jammie

[Guest guest]

Jammie,

Thanks for giving us more information to go by. If you have read some of the information that was put years ago it will scare you to death. Most of the information is incorrect. Oh the most part RP is not fatal. If treated and you are put on the right meds you can lead a fairly normal life with it.

Did you get a chance to go to www.polychondritis.org There is a lot of information there.

RP is treatable but so far no cure has been found. Some in the group have had it for years. I have had it for over 8 years and I am still as ornery as ever.

I have never had the redness in the legs. I think others in the group have but think it was vasculitis or something like that.

One thing I can tell you is that no two cases of RP are the same. Every person is different so it takes different meds to get it under control for each of us. I take Imuran (anti rejection drug) and prednisone when I flare. Prednisone is one of the common drugs for treatment of RP. It is the one drug that is used to reduce the swelling with RP. Some people in the group have to take high dose of the pred. and some are on maintenance doses.(5mg or less)

I have had ear, nose, rib, and joint flares. That seems to be where the RP has stayed to I am not doing too bad. These flares are very painful but not nearly as bad as they were before the meds. It seems with RP the sooner you are diagnosed with it the better off you are. If left untreated RP can cause major damage.

Hope this helped! Please keep posting and tell us your Mom's name too! We do care and you will find we are like a big family here. Each member is important here.

Take care and feel free to ask all the questions you would like!

Lots of love

Glenda

[Guest guest]

In a message dated 5/2/02 10:13:09 AM Pacific Daylight Time,

sharynn@... writes:

<< Where exactly do you have that rib pain. >>

Sharyn, I'm going to jump in here. lOL I have rib pain alot and it hurts ALL

over. LOL Usually starts in the front where it is connected to the sternum

and then goes all the way around to the back. My drs. tell me too this is

part fibro. Heck, who knows what is causing what any more. LOL Yes the

lists just keep growing. LOL

hugs

claudia