Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Hi Everyone: The pill does work with ephedrine. Docs insist that I use prescription form that is name brand only so that is is very stable and consistant in dosage. Was told not to use any herbal of off brand since these contain different forms or dosages. The pill does give you energy which is very helpful with what we have to deal with. I'm trying to find article on ephedrine and severe throat manifestations so that others can possibly take to docs if they want to try. Again, it's going to be very difficult to get any doc to explore this avenue because they will say we are sick enough already, but I do know my body and this really does keep my breathing and throat problems much more under control. Don't think this med controls the ears or nose flairs though, because my ears and nose still do get red. Fortunately they don't swell or hurt, just feel hot so am thankful for that. Do not believe that the pill really works on that mechanism of the RP personally but that Minocin and Ibu kick in there. Again, this isn't a miracle cure by any means and I still do flair at times but no where like I did without it. Never even had throat problems until I went off of it. I know this sounds really wierd but ephedrine is also used in people with vascular insufficiency and I have vasculitis which does result in problems like that so maybe it helps that too. Oh, FYI also last night I had some friends over and used a Citronella candle outside to try to keep bugs away. Within 2 minutes I had no voice and had to take 1800mg of Ibu to start to reverse. My voice is still a little raspy today but much better. Am trying not to take Pred if possible. Once I blew out the candle and took Ibu no longer any lump in throat so think I'm ok. Everyone be real careful with those candles because it may bother some of you also. Guess I'm full of all kinds of bizarre information this week huh. Hope everyone has a great Sunday! Take care, Cath Carmela Oliveri wrote: Hi Cath How can i possibly be angry with you... you clearly stated that this is what worked for you and ppl should consult their doctors first before taking anything... you were only trying to help out... who would have thought a diet pill would help someone with RP... go figure... My own rheumy stated that there aren't many meds on the market for RP,and that pred is mainly used... i'm thinking of mentioning this to my rheumy and see what he says, even just for curiousity... but i don't know if that diet pill is available here in Canada... yep, my nose is still painful and swelling is worse in the AM... sigh... i've been on pred at 75 mg for 3 days now and still waiting for improvement... will keep you all updated... thanks again and be well love and hugs Carmela ) ****************************************** (some snippage...) > >Reply-To: Rpolychondritisegroups >To: Rpolychondritisegroups >Subject: Re: re: environmental concerns >Date: Sat, 29 Jul 2000 07:46:44 -0400 > >Hi Connie: > >Yes Dr. Silverstein feels that the Minocin is also helping with the >array of problems I have. Not sure If he feels it is directly the cause >of my getting so much better, but he definately feels it contributes. > >Ok guy, disclaimer here. I'm going to post once more something >extremely controversial and not really credited much to treatment of RP >but something that I personally feel is very much one of the reasons I >am doing so well. I just want to say this was stumbled upon accidently >and getting most docs to even consider is really a far shot, but if >anyone can benefit possibly from it I will post it. Again, this is not >medical advise just food for thought and I hope no one judges me for >it. I just can't stand by if something may possibly help others and not >post. I posted this once before after talking with Angie as to whether >I should and she felt it I should do it in the past, so since we have so >many new members, maybe this information might help. DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU can not contact proxy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Hi Cath I read in my medicine book that ephedrine helps to stop allergic reactions. Maybe this is how it helps RP. Our Immune system attacks things that we are allergic to so if ephedrine helps this it may also help stop our immune system from attacking us. Just a thought. Elaine. ---------- > > To: Rpolychondritisegroups > Subject: Re: Cath ) > Date: July 30, 2000 4:51 AM > Hi Everyone: The pill does work with ephedrine. Docs insist that I use prescription form that is name brand only so that is is very stable and consistant in dosage. Was told not to use any herbal of off brand since these contain different forms or dosages. The pill does give you energy which is very helpful with what we have to deal with. I'm trying to find article on ephedrine and severe throat manifestations so that others can possibly take to docs if they want to try. Again, it's going to be very difficult to get any doc to explore this avenue because they will say we are sick enough already, but I do know my body and this really does keep my breathing and throat problems much more under control. Don't think this med controls the ears or nose flairs though, because my ears and nose still do get red. Fortunately they don't swell or hurt, just feel hot so am thankful for that. Do not believe that the pill really works on that mechanism of the RP personally but that Minocin and Ibu kick in there. Again, this isn't a miracle cure by any means and I still do flair at times but no where like I did without it. Never even had throat problems until I went off of it. I know this sounds really wierd but ephedrine is also used in people with vascular insufficiency and I have vasculitis which does result in problems like that so maybe it helps that too. Oh, FYI also last night I had some friends over and used a Citronella candle outside to try to keep bugs away. Within 2 minutes I had no voice and had to take 1800mg of Ibu to start to reverse. My voice is still a little raspy today but much better. Am trying not to take Pred if possible. Once I blew out the candle and took Ibu no longer any lump in throat so think I'm ok. Everyone be real careful with those candles because it may bother some of you also. Guess I'm full of all kinds of bizarre information this week huh. Hope everyone has a great Sunday! Take care, Cath Carmela Oliveri wrote: > Hi Cath > > How can i possibly be angry with you... you clearly stated that this > is what > worked for you and ppl should consult their doctors first before > taking > anything... you were only trying to help out... who would have thought > a > diet pill would help someone with RP... go figure... > > My own rheumy stated that there aren't many meds on the market for > RP,and > that pred is mainly used... i'm thinking of mentioning this to my > rheumy and > see what he says, even just for curiousity... but i don't know if that > diet > pill is available here in Canada... > > yep, my nose is still painful and swelling is worse in the AM... > sigh... > i've been on pred at 75 mg for 3 days now and still waiting for > improvement... will keep you all updated... > > thanks again and be well > love and hugs > Carmela ) > > ****************************************** > (some snippage...) > > > > >Reply-To: Rpolychondritisegroups > >To: Rpolychondritisegroups > >Subject: Re: re: environmental concerns > >Date: Sat, 29 Jul 2000 07:46:44 -0400 > > > >Hi Connie: > > > >Yes Dr. Silverstein feels that the Minocin is also helping with the > >array of problems I have. Not sure If he feels it is directly the > cause > >of my getting so much better, but he definately feels it contributes. > > > > >Ok guy, disclaimer here. I'm going to post once more something > >extremely controversial and not really credited much to treatment of > RP > >but something that I personally feel is very much one of the reasons > I > >am doing so well. I just want to say this was stumbled upon > accidently > >and getting most docs to even consider is really a far shot, but if > >anyone can benefit possibly from it I will post it. Again, this is > not > >medical advise just food for thought and I hope no one judges me for > >it. I just can't stand by if something may possibly help others and > not > >post. I posted this once before after talking with Angie as to > whether > >I should and she felt it I should do it in the past, so since we have > so > >many new members, maybe this information might help. > > > > > ----------------------------------------------------------------------- > > ----------------------------------------------------------------------- > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR > YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS > DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 Elaine: Very interesting thought. I know there must be some link at least with me because the difference is so dramatic. Will post the name of the article I found. It was just a synopsis of the article but did show that ephedrine did help. Wish docs would investigate this but doubt they will. I have just become so in tune with my body and how it flair, feels etc that there is some kind of link. What a wierd situation to find myself. I do think all of us feel in some way the docs are experimenting because they don't really know what to do. Wouldn't it be interesting to see if any other docs will agree and see how someone else might do. Probably dreaming that I stumbled across something that could help others since we all desperately want to help each other. Oh well, maybe down the line all our input will benefit us. I know emotionally and physically, this group has been a blessing for me. Hope everyone has a nice evening. Cath Elaine Thurber wrote: > Hi Cath > I read in my medicine book that ephedrine helps to stop allergic reactions. > Maybe this is how it helps RP. Our Immune system attacks things that we are > allergic to so if ephedrine helps this it may also help stop our immune > system from attacking us. Just a thought. > Elaine. > > ---------- > > > > To: Rpolychondritisegroups > > Subject: Re: Cath ) > > Date: July 30, 2000 4:51 AM > > > Hi Everyone: > > The pill does work with ephedrine. Docs insist that I use prescription > form that is name brand only so that is is very stable and consistant in > dosage. Was told not to use any herbal of off brand since these contain > different forms or dosages. > > The pill does give you energy which is very helpful with what we have to > deal with. I'm trying to find article on ephedrine and severe throat > manifestations so that others can possibly take to docs if they want to > try. Again, it's going to be very difficult to get any doc to explore > this avenue because they will say we are sick enough already, but I do > know my body and this really does keep my breathing and throat problems > much more under control. > > Don't think this med controls the ears or nose flairs though, because my > ears and nose still do get red. Fortunately they don't swell or hurt, > just feel hot so am thankful for that. Do not believe that the pill > really works on that mechanism of the RP personally but that Minocin and > Ibu kick in there. Again, this isn't a miracle cure by any means and I > still do flair at times but no where like I did without it. Never even > had throat problems until I went off of it. I know this sounds really > wierd but ephedrine is also used in people with vascular insufficiency > and I have vasculitis which does result in problems like that so maybe > it helps that too. > > Oh, FYI also last night I had some friends over and used a Citronella > candle outside to try to keep bugs away. Within 2 minutes I had no > voice and had to take 1800mg of Ibu to start to reverse. My voice is > still a little raspy today but much better. Am trying not to take Pred > if possible. Once I blew out the candle and took Ibu no longer any lump > in throat so think I'm ok. Everyone be real careful with those candles > because it may bother some of you also. Guess I'm full of all kinds of > bizarre information this week huh. > > Hope everyone has a great Sunday! > > Take care, > > Cath > > Carmela Oliveri wrote: > > > Hi Cath > > > > How can i possibly be angry with you... you clearly stated that this > > is what > > worked for you and ppl should consult their doctors first before > > taking > > anything... you were only trying to help out... who would have thought > > a > > diet pill would help someone with RP... go figure... > > > > My own rheumy stated that there aren't many meds on the market for > > RP,and > > that pred is mainly used... i'm thinking of mentioning this to my > > rheumy and > > see what he says, even just for curiousity... but i don't know if that > > diet > > pill is available here in Canada... > > > > yep, my nose is still painful and swelling is worse in the AM... > > sigh... > > i've been on pred at 75 mg for 3 days now and still waiting for > > improvement... will keep you all updated... > > > > thanks again and be well > > love and hugs > > Carmela ) > > > > ****************************************** > > (some snippage...) > > > > > > > >Reply-To: Rpolychondritisegroups > > >To: Rpolychondritisegroups > > >Subject: Re: re: environmental concerns > > >Date: Sat, 29 Jul 2000 07:46:44 -0400 > > > > > >Hi Connie: > > > > > >Yes Dr. Silverstein feels that the Minocin is also helping with the > > >array of problems I have. Not sure If he feels it is directly the > > cause > > >of my getting so much better, but he definately feels it contributes. > > > > > > > >Ok guy, disclaimer here. I'm going to post once more something > > >extremely controversial and not really credited much to treatment of > > RP > > >but something that I personally feel is very much one of the reasons > > I > > >am doing so well. I just want to say this was stumbled upon > > accidently > > >and getting most docs to even consider is really a far shot, but if > > >anyone can benefit possibly from it I will post it. Again, this is > > not > > >medical advise just food for thought and I hope no one judges me for > > >it. I just can't stand by if something may possibly help others and > > not > > >post. I posted this once before after talking with Angie as to > > whether > > >I should and she felt it I should do it in the past, so since we have > > so > > >many new members, maybe this information might help. > > > > > > > > > > ----------------------------------------------------------------------- > > > > ----------------------------------------------------------------------- > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR > > YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS > > DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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