Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Sorry this is so late, but it's a good idea even if you thought of it. LOL How about a " list " of the drugs we are all using for RP? This could be helpful too for doctors who aren't very familiar with RP. Everyone please list a drug that you are using for your RP if you don't see it on this list. Prednisone Dapsone >>>>>>>>>>>>>>>>>>>>>>>>>> OK gang, according to the last survey, 29% of the people who filled it out (ok so it was only 8 but that IS 8 who need help) are first time visitors to the site. I knew we were getting a lot of hits but I didn't know how many were repeats. Now I do. We need some helpful information for these new people. They are scared, upset, frightened, worried and looking for answers and YOUR website needs to provide it for them. Everyone please send me a list of questions, concerns and worries that you had when you were first diagnosed and then I want you to send me an answer to those questions. We're going to put up a " Help me I was just diagnosed " page! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Sorry this is so late, but it's a good idea even if you thought of it. LOL How about a " list " of the drugs we are all using for RP? This could be helpful too for doctors who aren't very familiar with RP. Everyone please list a drug that you are using for your RP if you don't see it on this list. Prednisone Dapsone >>>>>>>>>>>>>>>>>>>>>>>>>> OK gang, according to the last survey, 29% of the people who filled it out (ok so it was only 8 but that IS 8 who need help) are first time visitors to the site. I knew we were getting a lot of hits but I didn't know how many were repeats. Now I do. We need some helpful information for these new people. They are scared, upset, frightened, worried and looking for answers and YOUR website needs to provide it for them. Everyone please send me a list of questions, concerns and worries that you had when you were first diagnosed and then I want you to send me an answer to those questions. We're going to put up a " Help me I was just diagnosed " page! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 In a message dated 4/18/2000 3:20:56 PM Pacific Daylight Time, susuw@... writes: << How about a " list " of the drugs we are all using for RP? >> We have a list posted on the web site. Might be a good idea to review and up date it tho. But I compiled the info and posted the drugs with all of thier associated information. http://hometown.aol.com/RLR1999/meds.htm Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Christy, I think the idea about the " Help me I have just been diagnosed with RP " is really great. If I knew what I was doing with the computer (other than getting by), I'd be glad to help somebody. Besides, I was just diagnosed in Jan. of this year and have got to say, I got all I know from my dear Sisters and Brothers out there in our wonderful group. I honestly don't know what I would have done if I had not come home from the Dr office on Jan.11 with my bottles of Prednisone and Dapsone in my hand and found you all when I looked those two long words. I have begun to flare more often, my ears get red and hot and I am in the middle of a flare now that started with my nose, then went to my ears for a day and now things are starting to cool down,. I'm back on Prednisone and 2 Dapsone a day. I could go on and on, Love and Prayers, Lulu (Lucy in NC) Woods wrote: > Sorry this is so late, but it's a good idea even if you thought of it. LOL > How about a " list " of the drugs we are all using for RP? > This could be helpful too for doctors who aren't very familiar with RP. > Everyone please list a drug that you are using for your RP if you don't see > it on this list. > > Prednisone > Dapsone > > > >>>>>>>>>>>>>>>>>>>>>>>>>> > OK gang, according to the last survey, 29% of the people who filled it out > (ok so it was only 8 but that IS 8 who need help) are first time visitors to > the site. I knew we were getting a lot of hits but I didn't know how many > were repeats. Now I do. We need some helpful information for these new > people. They are scared, upset, frightened, worried and looking for answers > and YOUR website needs to provide it for them. Everyone please send me a > list of questions, concerns and worries that you had when you were first > diagnosed and then I want you to send me an answer to those questions. We're > going to put up a " Help me I was just diagnosed " page! > > Christy > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > http://click./1/3011/1/_/32049/_/956096274/ > ------------------------------------------------------------------------ > > 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 18, 2000 Report Share Posted April 18, 2000 , I think your idea is good for listing the meds that the many of us are on. There seem to be so many different ones and some sound so very powerful. I know how powerful Prednisone can be cause it is what straightened my face back up when I had Bell's Palsy in 1992! I know it was not just the med itself, side effects are different in all of us, I really got more than my share when I finished with the six week treatment of Prednisone. I still had the lack of energy side effect in Jan. when I had to go on it once again I felt horrible for several weeks. I hope when I get off of it again in the next 3 weeks, that it won't do me the same way again. At least I will have a better idea of what to expect everytime I come down after a stretch of it. Good idea to list drugs for members! Love and Prayers, Lucy Woods wrote: > Sorry this is so late, but it's a good idea even if you thought of it. LOL > How about a " list " of the drugs we are all using for RP? > This could be helpful too for doctors who aren't very familiar with RP. > Everyone please list a drug that you are using for your RP if you don't see > it on this list. > > Prednisone > Dapsone > > > >>>>>>>>>>>>>>>>>>>>>>>>>> > OK gang, according to the last survey, 29% of the people who filled it out > (ok so it was only 8 but that IS 8 who need help) are first time visitors to > the site. I knew we were getting a lot of hits but I didn't know how many > were repeats. Now I do. We need some helpful information for these new > people. They are scared, upset, frightened, worried and looking for answers > and YOUR website needs to provide it for them. Everyone please send me a > list of questions, concerns and worries that you had when you were first > diagnosed and then I want you to send me an answer to those questions. We're > going to put up a " Help me I was just diagnosed " page! > > Christy > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > http://click./1/3011/1/_/32049/_/956096274/ > ------------------------------------------------------------------------ > > 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 19, 2000 Report Share Posted April 19, 2000 list of drugs: daypro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Geez, I didn't know that. Do both sites have that already? I guess I need to go look at them both again then. >>>>>>>>>>>>>>>>> << How about a " list " of the drugs we are all using for RP? >> We have a list posted on the web site. Might be a good idea to review and up date it tho. But I compiled the info and posted the drugs with all of thier associated information. http://hometown.aol.com/RLR1999/meds.htm Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 , I am currently on: Prednesone Methotrexate Folic Acid Quote Link to comment Share on other sites More sharing options...
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