Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Cheryl, How wonderful about your wisteria. I love them. I had one at our old house and it bloomed for the first time a week before we moved. At least I saw it.lol Will try on here this year, then wait and wait. Take care. Love ya C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Cheryl, I love wisteria too!! It does smell so good. I tried to grow some and just finally gave up. If you have a special secret, please let me know. Love and Prayers, Lucy in NC mrsclewis@... wrote: > Hi , I meant to respond to this question as well....... I was one of > those mild RP patients. The doctor didn't want to overmedicate me. The > prednisone was given on short term basis and the reasoning was my sensitivity > to medications. I was having worse reactions to the drugs than the RP. > > Anti-inflammatories is the first course of treatments if not life > threatening, prednisone the second and other meds. (dapsone, enebral, > cyclosporine) for chronic RP. I have never heard of not treating at all. I > would get a second opinion if a doctor said that to me. > > Placquenil is the drug I responded best to. But I do have side effects: > eyes and muscle weakness. > > I think (not H. but the that is on enbral) had the same > problem with med reactions and became sicker from meds. > > Take care, Cheryl L. > P.S. Congrats to Dan on the birth of his son! > > P.P.S. I have been in heaven for a week -- my wisterie vine bloomed for the > first time. I have been nurturing this baby for 7 1/2 years. What a great > feeling. > > ------------------------------------------------------------------------ > Remember four years of good friends, bad clothes, explosive chemistry > experiments. > http://click./1/4051/1/_/32049/_/958787415/ > ------------------------------------------------------------------------ > > 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 May 19, 2000 Report Share Posted May 19, 2000 It helps. Thanks for your response. I thought the cellulitis would require prompt treatment and he has never got it and it didn;t spread. thats why I don't believe that Diagnosis drutledge wrote: > Hi every one, R. > Mild RP can be treated in the beginning phases of this disease with NASIDs. > Two every affective ones that aren't mention often are flexiril and relafen. > Yes they can be taken along with metho. I've been on all three for over a > year. With no side effects. > > The Ear Lobe is " usually " spared is what I have read in many of these > reports. Meaning that it can also be effected but not as a rule. There are > two similar conditions called cauliflower ear which attack the whole ear. > Celluitice can also attack the whole ear. All three can be confused. And > should merit a second opinion. > ( Cellutitice is an infection in the upper layers of the skin, it can spread > rapidly and requires prompt medical care.) > > Then skin rashes could be caused by Lupus Derma. this is an associated > disease to RP. And you can have them both. A topical hydrocortisone cream > may do the trick in getting rid of the rash. > > Hope this helps. > R. > > ------------------------------------------------------------------------ > Save 75% on Products! > Find incredible deals on overstocked items with Free shipping! > http://click./1/4013/1/_/32049/_/958801867/ > ------------------------------------------------------------------------ > > 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 May 20, 2000 Report Share Posted May 20, 2000 Tina, There was one year between my first flare and my second one. After that it was 6 weeks to 3 months. Then I stayed on prednisone. My ear only flared and it was very painful. He has no pain at all? If so, I would say it's a good sign, but I'm no doctor( although at times I think I know more)lol. Keep us posted. Love, C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 Thanks to everyone who responded to these questions. Our newest members needed some answers that they weren't getting from their doctors, so I'm sure you've all helped a lot. If anyone else has questions, please don't hesitate to ask them. That's what we're all here for. To help and support each other through our own personal knowledge and experience of this disease. Janet also said something very important. We have suggestions, but you need to find a competent doctor familiar with RP to help you. This is the most important thing to do!!!! Cheryl, so glad to hear your wisteria is blooming. I'll beat it smells so good right now. Congrats on getting it to finally bloom!!!! >>>>>>>>>>>>>>>>>>>>>>>>>>>> Hi , I meant to respond to this question as well....... I was one of those mild RP patients. The doctor didn't want to overmedicate me. The prednisone was given on short term basis and the reasoning was my sensitivity to medications. I was having worse reactions to the drugs than the RP. Anti-inflammatories is the first course of treatments if not life threatening, prednisone the second and other meds. (dapsone, enebral, cyclosporine) for chronic RP. I have never heard of not treating at all. I would get a second opinion if a doctor said that to me. Placquenil is the drug I responded best to. But I do have side effects: eyes and muscle weakness. I think (not H. but the that is on enbral) had the same problem with med reactions and became sicker from meds. Take care, Cheryl L. P.S. Congrats to Dan on the birth of his son! P.P.S. I have been in heaven for a week -- my wisterie vine bloomed for the first time. I have been nurturing this baby for 7 1/2 years. What a great feeling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 I'm asking for Ron again. All of you seem to have quite alot of pain with RP. Ron hasn't had much with his flares. Could that be a positive indicator that he doesn't have RP. His flares have also been months apart. Many I am hearing of sound much closer together. Thanks for all your responses. Tina Woods wrote: > Thanks to everyone who responded to these questions. Our newest members > needed some answers that they weren't getting from their doctors, so I'm > sure you've all helped a lot. > If anyone else has questions, please don't hesitate to ask them. That's what > we're all here for. To help and support each other through our own personal > knowledge and experience of this disease. > Janet also said something very important. We have suggestions, but you need > to find a competent doctor familiar with RP to help you. This is the most > important thing to do!!!! > Cheryl, so glad to hear your wisteria is blooming. I'll beat it smells so > good right now. Congrats on getting it to finally bloom!!!! > > >>>>>>>>>>>>>>>>>>>>>>>>>>>> > > Hi , I meant to respond to this question as well....... I was one of > those mild RP patients. The doctor didn't want to overmedicate me. The > prednisone was given on short term basis and the reasoning was my > sensitivity > to medications. I was having worse reactions to the drugs than the RP. > > Anti-inflammatories is the first course of treatments if not life > threatening, prednisone the second and other meds. (dapsone, enebral, > cyclosporine) for chronic RP. I have never heard of not treating at all. > I > would get a second opinion if a doctor said that to me. > > Placquenil is the drug I responded best to. But I do have side effects: > eyes and muscle weakness. > > I think (not H. but the that is on enbral) had the same > problem with med reactions and became sicker from meds. > > Take care, Cheryl L. > P.S. Congrats to Dan on the birth of his son! > > P.P.S. I have been in heaven for a week -- my wisterie vine bloomed for the > first time. I have been nurturing this baby for 7 1/2 years. What a great > feeling. > > ------------------------------------------------------------------------ > GET WHO WANTS TO BE A MILLIONAIRE FREE! GET THE OFFICIAL COMPANION > TO TELEVISION'S HOTTEST GAME SHOW PHENOMENON PLUS 5 MORE BOOKS FOR > $2. Click for details. > http://click./1/3014/1/_/32049/_/958875882/ > ------------------------------------------------------------------------ > > 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 May 20, 2000 Report Share Posted May 20, 2000 This is Tina again, Hi , Yes there is some pain. He describes it as burning the day before is swells and becomes red and feels warm to touch he thinks. I have seen him take IBprophen because it is uncomfortable but nothing (as Yet ) like what many of you have described. I can't imagine. I wish there was more knowledge among the Dr.'s tp provide the help. I think what all of you are doing will really help them. I am asking Ron to document evrything. Every ache and pain. He is still partially denying how serious this could be. He want to just believe What the 2nd DR told him. He is very slow at typing. We are talking hunt and peck but that was all I did when we first got the computer. I do believe if another flare occurs this group will have his attention. I want to get a list of names and be praying for each of you. I do believe God is listening. You people are an answer to mine as far as What is this GOD! I'm signing out. Our grandkids wore us out. My husband is such a great grandpa. Congrats on the Westeria Blooming. What patience and persistence.Tina RCColloran@... wrote: > Tina, There was one year between my first flare and my second one. After > that it was 6 weeks to 3 months. Then I stayed on prednisone. My ear only > flared and it was very painful. He has no pain at all? If so, I would say > it's a good sign, but I'm no doctor( although at times I think I know > more)lol. Keep us posted. > > Love, > C > > ------------------------------------------------------------------------ > High rates giving you headaches? The 0% APR Introductory Rate from > Capital One. 9.9% Fixed thereafter! > http://click./1/3010/1/_/32049/_/958887655/ > ------------------------------------------------------------------------ > > 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 May 23, 2000 Report Share Posted May 23, 2000 Tina, Don't fool yourself or your husband thinking it may not be RP. When I had my first flare (Oct 1998) it was correctly diagnosed and I did not have another one for six months. The six month episodes lasted until Dec 1999, when I had 3 consecutive flares (all in my left ear). The last three were definitely a little more painful than the first few that I had. We would all like to think that RP isn't a possibility, but until you know for sure, don't give up looking down that road. You truly need to find a Dr. that will give you some sound answers and someone who has treated RP. Kathleen (NY) Quote Link to comment Share on other sites More sharing options...
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