Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Carol, HI and welcome to the most wonderful group you'll ever find. I am new to the group also. They are a wealth of information and can't even describe the support and laughter they bring to me. I'm sorry to hear about your flares and previous problems. What kind of flares are you having in your arms, legs, and feet. I have only had flares in my ears, nose, ribs, throat and chest. I am on 20 mg of pred and 15 mg of methotrexate. Don't get too down, and if you do, there are plenty of us here for you. Don't be afraid to give a hollar. Much love and welcome C from California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Hi carol here, I'm sorry to here that this disease has affected you in this way. I will pray for you. As you can see this diseases affect us differently. I know for me it started in my eye first then immediatly to my trach. So i know exactly how you must be feeling. But remember God is with each and everyone of us. And as long as we stick together, and help one another and contiue to support each other we will make it. It's hard i know, i was just 23 black, female, and was very healthy and exercised regulary, and i fit the wrong profile for people who get RP. I was so sad and would constantly ask, why me? What did i do that made God punish me? I never doubted God for one minute though. Thinking like this made it worse? The best thing that has happend to me was this group since this disease. Oh yeah and me getting married last year. But i hope this helps you some if any. I hope to hear from you more. Love First Timer Hello to everyone. Am sooooo glad to have finally found a chat group specifically for RP. I was diagnosed 2 years ago during severe ear flare. Had biopsy to confirm diagnosis. Since then have stuggled with repeated problems with my ears. Last May, was diagnosed with nodules in my left lower lung. A lung resection was performed. Was on considerable meds (prednisone, methotrexate, cyclosporine) prior to lung surgery. After surgery, all was well. The RP seemed to be in remission. No meds at all. Now, in the last two weeks, have had severe flares in my legs, rt. foot, and left arm. Chest xray shows cloudy in both lungs. Currently taking 20 mg. prednisone and will see doc today for possible additions. Need emotional support from others with RP at this point. Am feeling quite down now, so looking for positive motivation. Hope you can help. Thanks. Carol. hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 CAOtto1@... wrote: > > Hello to everyone. Am sooooo glad to have finally found a chat group > specifically for RP. I was diagnosed 2 years ago during severe ear > flare. Had biopsy to confirm diagnosis. Since then have stuggled > with repeated problems with my ears. Last May, was diagnosed with > nodules in my left lower lung. A lung resection was performed. Was > on considerable meds (prednisone, methotrexate, cyclosporine) prior > to lung surgery. After surgery, all was well. The RP seemed to be in > remission. No meds at all. Now, in the last two weeks, have had > severe flares in my legs, rt. foot, and left arm. Chest xray shows > cloudy in both lungs. Currently taking 20 mg. prednisone and will > see doc today for possible additions. Need emotional support from > others with RP at this point. Am feeling quite down now, so looking > for positive motivation. Hope you can help. Thanks. Carol. > > ------------------------------------------------------------------------ > 25% Off All Prints! > Buy one today at Corbis.com > http://click./1/3357/1/_/32049/_/955635833/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't dear carol- im sorry you are feeling down-me too-its hard to be attacked from the inside-its frustrated when you are relatively symptom free only to have new and worse sympoms arise-it must be the time of year for exacerbations-everyone seems to be flaring-welcome carol-this site is great for support and information-it stinks to feel like here i go again when you think you had handle on it-please tell us about yourself-age-where you live-life stats-hope you feel better soon-april Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 CAOtto1@... wrote: > > Hello to everyone. Am sooooo glad to have finally found a chat group > specifically for RP. I was diagnosed 2 years ago during severe ear > flare. Had biopsy to confirm diagnosis. Since then have stuggled > with repeated problems with my ears. Last May, was diagnosed with > nodules in my left lower lung. A lung resection was performed. Was > on considerable meds (prednisone, methotrexate, cyclosporine) prior > to lung surgery. After surgery, all was well. The RP seemed to be in > remission. No meds at all. Now, in the last two weeks, have had > severe flares in my legs, rt. foot, and left arm. Chest xray shows > cloudy in both lungs. Currently taking 20 mg. prednisone and will > see doc today for possible additions. Need emotional support from > others with RP at this point. Am feeling quite down now, so looking > for positive motivation. Hope you can help. Thanks. Carol. > > ------------------------------------------------------------------------ > 25% Off All Prints! > Buy one today at Corbis.com > http://click./1/3357/1/_/32049/_/955635833/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't carol-read your post again and see that i wasnt particularly uplifting-the thing itry to keep in mind is that the symptoms go away-i had a terible time with feet pain before diagnosed-it lasted for a year with no medicine-and went away-comes and goes infrequently-perhaps you need to be on a low maintenance dose of prednisone-ive accepted the fact that ill never get off of it-i still have flares but they arent as severe-if they are i up the prednisone and in a day or two it subsides-i take comfort in the fact i dont have lou gehrigs disease-so i guess it could be worse-thats what makes me feel better-knowing there are worse diseases-please hang in there-april Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Hi Carol, Welcome to the group. I'm fairly new also with RP starting in my ears. We are here for you, for suggestions, support and whatever else you need. There are so many people in this group that are a wealth of information, you will be amazed and so will your doctors. Print and retain all info directed your way. I did and believe me, you will cherish every bit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Thanks for the valuable words of encouragement. Was a day at the docs. My CT indicated several lymph nodes are in question right now. The doc increased the prednisone to 60 mg/day to see if its the RP causing the problem (could be cancer otherwise). He doesn't want to start with methotrexate again til we're sure. May mean another biopsy if next weeks scan comes back the same or worse. Swelling in my elbow and foot has gone done some, but still very sore. Sleep has been ellusive for me, so doc also prescribed a med to help with that. Feel very fortunate to have finally found the group I really need now. Thanks again! Carol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Carol: here. Glad to have you aboard, but sorry to hear of your diagnosis and recent flair. You will friend a terrific group of people here who have gone through numberous trials and errors and openly give advise, compassion and care. Since finding this group last Feb I have a different outlook on my RP diagnosis. I have found so many new friends who are now family in my eyes. We not only provide information on our health, but share our joys and sorrows and some really warped sense of humors (Roy, Angie, , Lu just to name a few) Sorry couldn't resist. Feel free to fill us in on what you have gone through and vent frustrations if you have them. (Can't imagine anyone with RP diagnosis that doesn't have frustrations!). We will try to help educated you on what has worked for some of us and will be a shoulder to lean on. We are here to listen support you in any way we can. Personally, I feel God has brought us together to help each other through this difficult challange in our lives and at this point I am very thankful that he has brought these unique and wonderful people into my life. Makes the diagnosis easier to deal with. Again, welcome! We look forward to getting to know you and trying to help in any way we can! Take care, CAOtto1@... wrote: Hello to everyone. Am sooooo glad to have finally found a chat group specifically for RP. I was diagnosed 2 years ago during severe ear flare. Had biopsy to confirm diagnosis. Since then have stuggled with repeated problems with my ears. Last May, was diagnosed with nodules in my left lower lung. A lung resection was performed. Was on considerable meds (prednisone, methotrexate, cyclosporine) prior to lung surgery. After surgery, all was well. The RP seemed to be in remission. No meds at all. Now, in the last two weeks, have had severe flares in my legs, rt. foot, and left arm. Chest xray shows cloudy in both lungs. Currently taking 20 mg. prednisone and will see doc today for possible additions. Need emotional support from others with RP at this point. Am feeling quite down now, so looking for positive motivation. Hope you can help. Thanks. Carol. hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Carol: here. Glad to have you aboard, but sorry to hear of your diagnosis and recent flair. You will friend a terrific group of people here who have gone through numberous trials and errors and openly give advise, compassion and care. Since finding this group last Feb I have a different outlook on my RP diagnosis. I have found so many new friends who are now family in my eyes. We not only provide information on our health, but share our joys and sorrows and some really warped sense of humors (Roy, Angie, , Lu just to name a few) Sorry couldn't resist. Feel free to fill us in on what you have gone through and vent frustrations if you have them. (Can't imagine anyone with RP diagnosis that doesn't have frustrations!). We will try to help educated you on what has worked for some of us and will be a shoulder to lean on. We are here to listen support you in any way we can. Personally, I feel God has brought us together to help each other through this difficult challange in our lives and at this point I am very thankful that he has brought these unique and wonderful people into my life. Makes the diagnosis easier to deal with. Again, welcome! We look forward to getting to know you and trying to help in any way we can! Take care, CAOtto1@... wrote: Hello to everyone. Am sooooo glad to have finally found a chat group specifically for RP. I was diagnosed 2 years ago during severe ear flare. Had biopsy to confirm diagnosis. Since then have stuggled with repeated problems with my ears. Last May, was diagnosed with nodules in my left lower lung. A lung resection was performed. Was on considerable meds (prednisone, methotrexate, cyclosporine) prior to lung surgery. After surgery, all was well. The RP seemed to be in remission. No meds at all. Now, in the last two weeks, have had severe flares in my legs, rt. foot, and left arm. Chest xray shows cloudy in both lungs. Currently taking 20 mg. prednisone and will see doc today for possible additions. Need emotional support from others with RP at this point. Am feeling quite down now, so looking for positive motivation. Hope you can help. Thanks. Carol. hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
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