Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 Hi, I hope I got the names right. My name is and I just wanted to welcome you both to the group. DC, I'm sorry to hear your sister has been diagnosed with RP, but am glad that you have found us. As you will both see, we all have different symptoms and many are taking different drugs to treat RP. There is no test for RP. I had a biopsy and it was inconclusive. We are diagnosed mainly by symptoms. RP may affect many areas of the body, not just the ears or nose. Sed rates don't always mean a thing. They can be normal and you can be in a major flare. Eating well and exercise does play an important role for RP just like any illness. What we don't want to do is to boost our immune system, we want to suppress it. That was always a hard one for me to figure out at first. LOL We should be careful what vitamins we take so we don't boost it too much. I will send out another post from Hobb with information to the newbies. I think it will be useful. Prednisone is usually the first line of treatment. I was treated with Vioxx at first and it did keep mine under control for a short while. There are other drugs that are usually added so you can get off the prednisone. Just remember that some damage is done with every flare. Lori, ( I hope that is your name) my ear was painful with no redness at first. It still does that at times. I think I'm going to flare and then nothing happens. I also have TJM and have had it for years. Yes, your symptoms sound a lot like TJM. I hope that is what you get for your final diagnosis. I'm glad to see that you both have jumped right in with questions. Please continue. There are a lot of us here and we are all ready to help. Again welcome and I can't wait to get to know you better. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 > Hi, I hope I got the names right. My name is and I just wanted to > welcome you both to the group. > > DC, I'm sorry to hear your sister has been diagnosed with RP, but am glad > that you have found us. As you will both see, we all have different symptoms > and many are taking different drugs to treat RP. > > There is no test for RP. I had a biopsy and it was inconclusive. We are > diagnosed mainly by symptoms. RP may affect many areas of the body, not just > the ears or nose. Sed rates don't always mean a thing. They can be normal > and you can be in a major flare. Eating well and exercise does play an > important role for RP just like any illness. What we don't want to do is to > boost our immune system, we want to suppress it. That was always a hard one > for me to figure out at first. LOL We should be careful what vitamins we > take so we don't boost it too much. I will send out another post from > Hobb with information to the newbies. I think it will be useful. > > Prednisone is usually the first line of treatment. I was treated with Vioxx > at first and it did keep mine under control for a short while. There are > other drugs that are usually added so you can get off the prednisone. Just > remember that some damage is done with every flare. > > Lori, ( I hope that is your name) my ear was painful with no redness at > first. It still does that at times. I think I'm going to flare and then > nothing happens. I also have TJM and have had it for years. Yes, your > symptoms sound a lot like TJM. I hope that is what you get for your final > diagnosis. > > I'm glad to see that you both have jumped right in with questions. Please > continue. There are a lot of us here and we are all ready to help. > > Again welcome and I can't wait to get to know you better. > > hugs > Hi and thanks for the welcome. Did yours start with the ears? That is the only symptom I have. A good night's rest clears it up so I'm really leaning towards TMJ. Thanks again for the info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 I had TMJ long before I was DX. with RP. With the TMJ my pain was in the joint rather than the external ear. Sandy That is the only symptom I have. A good night's rest clears it up so I'm really leaning towards TMJ. Thanks again for the info.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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