Guest guest Posted October 12, 2002 Report Share Posted October 12, 2002 (AZ) You are so welcome. Like I said we are all here for you. I am sure you will get a lot of answers. Remember we are not dr. but some are well versed in RP. I was diagnosed by symptoms. Ears kept flaring and wouldn't quit. They were treating it like a staff infection. I keep hurting and they kept giving me antibiotics. Needless to say they were not treating the RP. There are several medications that we all can take. It just depends what works for you. Each of us is so different and each person takes all different meds. About the only one drug that we all have in common is Predisone. Not our drug of choice just one that works. It keeps the damage that the flares cause way down. The other medications we all take are immuno-suppressants or anti rejection drugs.(my spelling is just awful) I am on Imuran and have been since I was first diagnosed. I take calcium and vitamins due to what the Pred. and Imuran take away from my system. I only take pred when I flare, so am lucky in that instance. Like I said others will answer you on this one. We all try to help each other here. Have went to our www.Polychondritis.org site. There is lots of information there. Our group members have started a foundation. We are less than two years old and are still in the growing stage. All work for the foundation is done on a volunteer basis by people who are all sick with this darn ole RP. Membership is only $15.00. All money that is received for the foundation goes to the education and to doctor's that are doing research on RP. Hope I was able to help and know that I am here for you. When you are first diagnosed it is a little scary with the not knowing. Remember RP may not be curable but it is treatable. Lots of love Glenda Glenda,Thanks for the welcome msg. The doctors I have seen since I first became ill 8 years ago, have been on the auto-immune trail for a long time - but until recently they have all said - yes we know something is wrong but we don't know what it is. How did your doctor diagnose RP initially? Would you tell me what meds you have taken? I would sure like to know what sort of pain meds work best for the bad flares.Thanks for any info you can share - I appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2002 Report Share Posted October 12, 2002 Hi ! I am newly diagnosed, as of December of 2001. I had been living with ear flares in my left ear, for about three years, before the RP spread through my entire body and I ended up in the E.R. with incredible pain and heat. At that time, I was put on three drugs: Prednisone, Indomethacin (NSAID) and Colchicine (gout medication). I then began to see Dr. Buckner and she added Methotrexate. I have recently discontinued the Indomethacin and Colchicine and we are attempting to lower my Prendisone. I am currently at 17.5 mgs., down from 20, but am struggling with a flare, so may need to raise again. I primarily get the RP in my joints, ears, nose and ribs. The ribs bother me the most. I wish you luck with the medications. It took about 9 months for the Methotrexate to really kick in and provide me with a couple of pain free days for the first time! Patience is one of the virtues that this condition is determined to teach me!! Take care and welcome to the group! M. Quote Link to comment Share on other sites More sharing options...
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