Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Welcome Sharon. Well, we now have 3 Sharons. Would you mind including your last initial? That way you three will know who we are addressing. We also have a ton of Cathy's. I had my first flare in my left ear. Thought I had slept on it wrong. After it got so painful, red and swollen, I went to the dr and was diagnoses with cellulitus. Spent 3 weeks on antibiotics and it finally went away. Then my next flare was a year later. Same thing. When the antibiotics didn't work I insisted on seeing and ENT. He proptly diagnosed me with RP and put me on prednisone. I was better within days. My second flare happened within 2 months of my mom passing away. Stress plays a BIG factor in RP. Think we all have a similar story. They do use Dapsone to help treat RP along with numerous other medications. I am on Plaquenil now which is an anti malarial medicine. Go figure. There is methotrexate which is a chemo drug and the list goes one. The main medication is prednisone. At least to get the initial flare under control, then they usually add another medication to get you off the prednisone. LOl Bet this all sounds so confusing huh? Well, I'm not the best explainer, so maybe someone else can do this better. Are you on Prednisone? The most important thing is to stop the flare fast before any damage is done. Please ask all the questions you want. This is how we all learn. I'm glad you found us and hope we can answer your questions. This is a great support group as you will soon find out. Can't wait to get to know you better hugs by the way, where do you live. I'm from California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 In a message dated 3/20/02 11:24:53 AM Pacific Standard Time, sharynn@... writes: << Well you have to admit...my names is spelled different >> Yes Sharyn, you make it easy on us. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Well you have to admit...my names is spelled different hugs Sharyn N > Welcome Sharon. Well, we now have 3 Sharons. Would you mind including your > last initial? That way you three will know who we are addressing. We also > have a ton of Cathy's. > > I had my first flare in my left ear. Thought I had slept on it wrong. After > it got so painful, red and swollen, I went to the dr and was diagnoses with > cellulitus. Spent 3 weeks on antibiotics and it finally went away. Then my > next flare was a year later. Same thing. When the antibiotics didn't work I > insisted on seeing and ENT. He proptly diagnosed me with RP and put me on > prednisone. I was better within days. > My second flare happened within 2 months of my mom passing away. Stress > plays a BIG factor in RP. > > Think we all have a similar story. They do use Dapsone to help treat RP > along with numerous other medications. I am on Plaquenil now which is an > anti malarial medicine. Go figure. There is methotrexate which is a chemo > drug and the list goes one. The main medication is prednisone. At least to > get the initial flare under control, then they usually add another medication > to get you off the prednisone. LOl Bet this all sounds so confusing huh? > Well, I'm not the best explainer, so maybe someone else can do this better. > > Are you on Prednisone? The most important thing is to stop the flare fast > before any damage is done. > > Please ask all the questions you want. This is how we all learn. I'm glad > you found us and hope we can answer your questions. > > This is a great support group as you will soon find out. > > Can't wait to get to know you better > > hugs > > > by the way, where do you live. I'm from California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Well you have to admit...my names is spelled different >> Yes Sharyn, you make it easy on us. LOL Not me because I can't spell. lol Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 This is the " old " Sharon....literally! I think I will just become known as " squeek " . That is what my sisters call me since I've been on Remicade. It consists of 1/3 mouse protein, so squeek seems appropriate. So, if any cheese comes up missing, just write to squeek. Love, squeek aka Sharon (OR) --- sharyn1948 wrote: > > Well you have to admit...my names is spelled > different > > hugs > > Sharyn N > > > > Welcome Sharon. Well, we now have 3 Sharons. > Would you mind > including your > > last initial? That way you three will know who we > are > addressing. We also > > have a ton of Cathy's. > > > > I had my first flare in my left ear. Thought I > had slept on it > wrong. After > > it got so painful, red and swollen, I went to the > dr and was > diagnoses with > > cellulitus. Spent 3 weeks on antibiotics and it > finally went > away. Then my > > next flare was a year later. Same thing. When > the antibiotics > didn't work I > > insisted on seeing and ENT. He proptly diagnosed > me with RP and > put me on > > prednisone. I was better within days. > > My second flare happened within 2 months of my mom > passing away. > Stress > > plays a BIG factor in RP. > > > > Think we all have a similar story. They do use > Dapsone to help > treat RP > > along with numerous other medications. I am on > Plaquenil now > which is an > > anti malarial medicine. Go figure. There is > methotrexate which > is a chemo > > drug and the list goes one. The main medication > is prednisone. > At least to > > get the initial flare under control, then they > usually add another > medication > > to get you off the prednisone. LOl Bet this all > sounds so > confusing huh? > > Well, I'm not the best explainer, so maybe someone > else can do > this better. > > > > Are you on Prednisone? The most important thing > is to stop the > flare fast > > before any damage is done. > > > > Please ask all the questions you want. This is > how we all > learn. I'm glad > > you found us and hope we can answer your > questions. > > > > This is a great support group as you will soon > find out. > > > > Can't wait to get to know you better > > > > hugs > > > > > > by the way, where do you live. I'm from > California > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Wow, Sharon, Sharyn, Squeek - that's a lot to choose from. Which do you prefer? Otherwise, I will get confused as to whom I am talking to. So pick one name, and I'll just use that. Altho', I've got to tell you, I really like squeek. Your choice! Thanks, and hang in there, just remember you can LIVE with RP! Some days it's tough, but it can be done and we do it everyday! hang in there! Love, Judy O Re: Re: I am new/ Sharon This is the "old" Sharon....literally! I think I willjust become known as "squeek". That is what mysisters call me since I've been on Remicade. Itconsists of 1/3 mouse protein, so squeek seemsappropriate. So, if any cheese comes up missing, justwrite to squeek. Love, squeek aka Sharon (OR)--- sharyn1948 wrote:>> Well you have to admit...my names is spelled> different >> hugs>> Sharyn N>> > > Welcome Sharon. Well, we now have 3 Sharons.> Would you mind> including your> > last initial? That way you three will know who we> are> addressing. We also> > have a ton of Cathy's.> >> > I had my first flare in my left ear. Thought I> had slept on it> wrong. After> > it got so painful, red and swollen, I went to the> dr and was> diagnoses with> > cellulitus. Spent 3 weeks on antibiotics and it> finally went> away. Then my> > next flare was a year later. Same thing. When> the antibiotics> didn't work I> > insisted on seeing and ENT. He proptly diagnosed> me with RP and> put me on> > prednisone. I was better within days.> > My second flare happened within 2 months of my mom> passing away.> Stress> > plays a BIG factor in RP.> >> > Think we all have a similar story. They do use> Dapsone to help> treat RP> > along with numerous other medications. I am on> Plaquenil now> which is an> > anti malarial medicine. Go figure. There is> methotrexate which> is a chemo> > drug and the list goes one. The main medication> is prednisone.> At least to> > get the initial flare under control, then they> usually add another> medication> > to get you off the prednisone. LOl Bet this all> sounds so> confusing huh?> > Well, I'm not the best explainer, so maybe someone> else can do> this better.> >> > Are you on Prednisone? The most important thing> is to stop the> flare fast> > before any damage is done.> >> > Please ask all the questions you want. This is> how we all> learn. I'm glad> > you found us and hope we can answer your> questions.> >> > This is a great support group as you will soon> find out.> >> > Can't wait to get to know you better> >> > hugs> > > >> > by the way, where do you live. I'm from> California>>=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Hey, I am squeek from now on. I like it too, and that will eliminate one of the Sharyn/Sharons. Just remember that squeek is the Sharon from Oregon. Love ya all! squeek --- Judith Ostry wrote: > Wow, Sharon, Sharyn, Squeek - that's a lot to choose > from. Which do you prefer? Otherwise, I will get > confused as to whom I am talking to. So pick one > name, and I'll just use that. Altho', I've got to > tell you, I really like squeek. Your choice! > Thanks, and hang in there, just remember you can > LIVE with RP! Some days it's tough, but it can be > done and we do it everyday! hang in there! Love, > Judy O > > Re: Re: I am new/ Sharon > > This is the " old " Sharon....literally! I think I > will > just become known as " squeek " . That is what my > sisters call me since I've been on Remicade. It > consists of 1/3 mouse protein, so squeek seems > appropriate. So, if any cheese comes up missing, > just > write to squeek. Love, squeek aka Sharon (OR) > --- sharyn1948 wrote: > > > > Well you have to admit...my names is spelled > > different > > > > hugs > > > > Sharyn N > > > > > > > Welcome Sharon. Well, we now have 3 Sharons. > > Would you mind > > including your > > > last initial? That way you three will know who > we > > are > > addressing. We also > > > have a ton of Cathy's. > > > > > > I had my first flare in my left ear. Thought I > > had slept on it > > wrong. After > > > it got so painful, red and swollen, I went to > the > > dr and was > > diagnoses with > > > cellulitus. Spent 3 weeks on antibiotics and it > > finally went > > away. Then my > > > next flare was a year later. Same thing. When > > the antibiotics > > didn't work I > > > insisted on seeing and ENT. He proptly > diagnosed > > me with RP and > > put me on > > > prednisone. I was better within days. > > > My second flare happened within 2 months of my > mom > > passing away. > > Stress > > > plays a BIG factor in RP. > > > > > > Think we all have a similar story. They do use > > Dapsone to help > > treat RP > > > along with numerous other medications. I am on > > Plaquenil now > > which is an > > > anti malarial medicine. Go figure. There is > > methotrexate which > > is a chemo > > > drug and the list goes one. The main medication > > is prednisone. > > At least to > > > get the initial flare under control, then they > > usually add another > > medication > > > to get you off the prednisone. LOl Bet this all > > sounds so > > confusing huh? > > > Well, I'm not the best explainer, so maybe > someone > > else can do > > this better. > > > > > > Are you on Prednisone? The most important thing > > is to stop the > > flare fast > > > before any damage is done. > > > > > > Please ask all the questions you want. This is > > how we all > > learn. I'm glad > > > you found us and hope we can answer your > > questions. > > > > > > This is a great support group as you will soon > > find out. > > > > > > Can't wait to get to know you better > > > > > > hugs > > > > > > > > > by the way, where do you live. I'm from > > California > > > > > > > ===== > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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