Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Hi and welcome to the group. I am not familiar with Dr. Zizic's report. As you will see we are all different. Some of us are in remission ( haven't had a flare in a long time), some of us just flare occassionaly, some of us flare regularly and some of us are in a continual flare. So you can see, it is not a disease that follows any rules. I had my first flare in my ear and was treated with antibiotics for cellulitis. It did clear up in about 3 weeks, but was hard to get rid of. I didn't have another flare for a year. Then the ol' RP decided to stick around for good. LOL I was on a lot of different meds til I found the right combination for me. We are all different here too. I have been hit with ear, nose, rib flares. It has affected the valves in my heart, but nothing that can't be fixed. " Relapsing " is just what it is. It comes and goes. Most of us are glad to see it stay away for long periods of time. Are you on any medication now? Prednisone is usually the first line treatment. I have been on prednisone since 1999. I am trying to get off slowly. There are a lot of different drugs they use with the prednisone. You will hear methotrexate, Plaquenil, Imuran, Dapsone, Remicade, Cytoxin, Enbrel... the list goes on. LOL Are you seeing a rheumatologist? That is who usually handles RP. You and your doctor will have to decide what works best for you to keep the flares under control. I'm sure you will get alot of input from the group. Keep us posted as to how you are doing. Remember, there is always someone here to talk to. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Hello, I am a new member. My name is and I live in Windsor, Ontario, Canada which is directly across the border from Detroit. I was diagnosed with RP just last week. In the past 6 months I have had 5 ear inflammations, 1 nose inflammation with two nose bleeds, and one skin infection on the lower leg. I am wondering if I am having a lot of episodes or if this is normal. I found an article by Dr. Zizic in which he mentions that 85% of the patients in one study had on average five episodes over a six year period. I've had 7 episodes in 6 months. I'm wondering how everyone else has fared. It's nice to be able to talk to other people with the same problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Hi : I am in the same boat as you, just diagnosed, and stumbling along. I had my last day on Pred. yesterday, and still have today on the antibiotics. Will let everyone know how I make out in the following weeks.......Ethel Effo or FO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 I am seeing a rheumatologist and have been offered steroids but I am still thinking about it because of the side effects. My flares have been very difficult to get rid of as well. I got an infection on my leg while taking antibiotics for my ear. I got a second flare on my ear while taking antibiotics for the first flare. It's all very tiresome and painful but I find I just can't feel sorry for myself for very long. Things could be worse. Knock wood. > Hi and welcome to the group. I am not familiar with Dr. Zizic's > report. As you will see we are all different. Some of us are in remission ( > haven't had a flare in a long time), some of us just flare occassionaly, some > of us flare regularly and some of us are in a continual flare. So you can > see, it is not a disease that follows any rules. > > I had my first flare in my ear and was treated with antibiotics for > cellulitis. It did clear up in about 3 weeks, but was hard to get rid of. I > didn't have another flare for a year. Then the ol' RP decided to stick > around for good. LOL I was on a lot of different meds til I found the right > combination for me. We are all different here too. > > I have been hit with ear, nose, rib flares. It has affected the valves in my > heart, but nothing that can't be fixed. > > " Relapsing " is just what it is. It comes and goes. Most of us are glad to > see it stay away for long periods of time. > > Are you on any medication now? Prednisone is usually the first line > treatment. I have been on prednisone since 1999. I am trying to get off > slowly. There are a lot of different drugs they use with the prednisone. You > will hear methotrexate, Plaquenil, Imuran, Dapsone, Remicade, Cytoxin, > Enbrel... the list goes on. LOL > Are you seeing a rheumatologist? That is who usually handles RP. > > You and your doctor will have to decide what works best for you to keep the > flares under control. I'm sure you will get alot of input from the group. > > Keep us posted as to how you are doing. > > Remember, there is always someone here to talk to. > > hugs > Quote Link to comment Share on other sites More sharing options...
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