Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Gobi, Hi and welcome. What symptoms do you have? Mine started with flaming red and sore ears. Was first dx with cellulitis. Antibiotics cleared it up (or so they thought in two weeks) One year later I had my second flare, same ear. Antibiotics did no good. Was finally dx with RP by ENT dr. They did a biopsy of my ear. The dr ran ANA blood tests and they come back possitive. I'm not sure, but I don't think there is a specific blood test for RP, but I could be wrong. Are you on any medication for it now? Mine was kept under control with NSAIDS and prednisone for about a year. Then I went to methotrexate, prednisone and folic acid. I take 1mg daily of folic acid. I know there is a debate as to weather folic acid counteracts the metho. I take is to counteract the side effects of the metho. I do not take it within 24hr of my metho dose. Who Knows???? Let us know what your symptoms are and what meds you are on. Do you flare frequently? Maybe you need a third opinion from a different dr. We've all been there.LOL Hope you are feeling okay and not in too much pain. We all hate the prednisone and I think that my main goal is to get off if possible. The one thing you don't want, is to flare and not get it under control, as every flare can do some damage. We are all on different meds and some work better for others. Each one of us is different. Hope you can get some answers here. Just keep asking the questions. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 My name is Gobi and I have been told by my doctor that I have R.P. yet another doctor tells me I do not have it. Is there a blood test to determine if I do or do not have it? Also, how much folic acid is recommended if I do have it? I will not go back on steroids as I felt it did more damage than good. Thanks for any info you can send gobi5@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Welcome to the group. My name is Jana and I am also a new member. I have had RP since Feb of this year, but was not diagnosed with RP until the end April of this year. I did quite a bit of suffering during those few months without Pred. When they finally figured out it was RP I started with 40mg. of Pred. My symtoms lessoned and were gone within 5 days. I currently take Methotrexate 10mgs(Fri.) and Folic Acid 1mg everyday, which I feel has helped me get off the Pred. I have been off the Pred. for about 6 weeks and so far I am doing very well. I also eat healthy and exercise everyday, which I also feel has played an important part in feeling better. What are your symptoms? Mine started with severe pain in the upper part of my ears which were so swollen I could not get a Q-tip in them. I also had scleritis of the eyes at the same time. This went on for months and then one morning I woke up unable to walk. I was in so much pain and no one knew what was going on. I lived in a small town whose idea of healing was give you a pain shot and send you home, which never helped. I was sent to a Rheumy who diagnosed it right away and I have felt better ever since. If you are scared about taking Pred, please don't be. The damage from the RP is far worse than the medication. Hopefully it will get the RP under control and they will start you on an immunosuppressant so that you may taper off of the Pred. If you ever need anything this group is the place to be. I am a shy insecure person and I have felt loved and cared for by this group. They always know how to make you feel better no matter if they are in pain or not, you always have loving support. Please take care of yourself. You will be in my prayers. Hugs and Prayers Jana. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 In a message dated 9/25/00 4:28:41 AM Pacific Daylight Time, susuw@... writes: << As far as the folic acid, I can't say. Has anyone heard about this being good for RP??? I don't remember hearing anything about taking folic acid specifically for helping RP. >> , I was told that folic acid counteracts methotrexate. They give it to me to help with the side effects of the metho. (Doesn't make sense does it)LOLO Well, I guess it works. My cardiologist says it is very helpful to the heart so it won't hurt me to take it. But when I think about it, maybe that's why the metho isn't working! Who the hell knows. I really need to find me a doctor!!! LOL Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Welcome! I'm . I have Crohn's Disease & the stuff that goes with it. I'm on prednisone, Remicade, 6-MP, Pentasa, & a bunch of other meds. -- Welcome new member! Everyone welcome our new member (dnamccon@... .. I don't know what name she'll sign on as!) She signed my guest book and I invited her to the list so everyone be nice! She has lupus and I'm interested in comparing meds and treatments and symptoms and such so let's make her feel at home! I forgot to mention to her that she can read about most of us on the website that works so hard on at http://ACES_Autoimmune.tripod.com Even though many of us (ducking my head in shame!) need to update our stuff LOL Christy List Mama with Pam and our "loverly" moderators! Y'all introduce yourselves! Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
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