Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Thank you Carol, I really appreciate you sharing that info about Rob's meds with me. Maybe upping the Midodrine will help. Does he side effects from the Midodrine? Are these dosages sufficient? Hope Rob and you have a good weekend, Wave >>> cblanger@... 07/27/01 01:03PM >>> Waverley, Here's what Rob takes: .3 mg of florinef (3 0.1mg tablets - at bedtime) 10 mg of midodrine, 3 times a day (30 mg total per day) at 8AM, noon and 4PM. The midodrine at 4 or the florinef at night might be difficult for someone who has problems with blood pressure spikes upward, but that has not been a problem for Rob either. Hope that helps, Carol & Rob > Hi, > > I wrote a couple of weeks back that my neurologist had not gotten back to me nor gotten back to my primary (GI specialist). I stated that I still couldn't get a appointment for 8 weeks in her clinic (as an emergency). Well, she still has not contacted us even when I walked on over to her office and wrote a note and spoke with her secretary. My primary, who recommended her and had trained with her at Penn, is stunned and feeling as helpless as I. > > The immediate issue is just how much florinef in combo with Midodrine can I take? I am taking . 8 mgs of Florinef and 15mgs of Midodrin. How high can I up my Florinef. As I stated, I have no hypertensive fluxes and am still crashing off and on all day with both blood pressure and sugar (besides all the severe polyneuropathy). I am on prednisone very often. I am running fevers that do not respond too much to Tylenol or ibuprofen. I use an antibiotic instillation into my bladder, my lungs are clear, but as usual my throat is coated and full of yuck and my ribs are very tight (trouble expanding). The rigidity of muscles comes and goes and is very painful. The spasms are pretty constant. > > I really need to find more ifo about max doses of Florinef. I'd appreciate any info. and or info about alternative treatments I might seek. I am not asking for professional advice but rather lay experience : ) > > Thank you- Cheers! > > Waverley If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Waverley, The only side effect Rob has from the midrodine is scalp itch, which is mild to moderate. Certainly better than passing out! One more thought -- are you getting enough salt? The florinef will not work without it. Rob takes Thermotabs, a buffered salt tablet, 4 tablets a day. The Thermotabs can be hard to find, but CVS can order them for you or you can order them on CVS.com. Good luck and have a nice weekend, Carol & Rob > > Hi, > > > > I wrote a couple of weeks back that my neurologist had not gotten > back to me nor gotten back to my primary (GI specialist). I stated > that I still couldn't get a appointment for 8 weeks in her clinic (as > an emergency). Well, she still has not contacted us even when I > walked on over to her office and wrote a note and spoke with her > secretary. My primary, who recommended her and had trained with her > at Penn, is stunned and feeling as helpless as I. > > > > The immediate issue is just how much florinef in combo with > Midodrine can I take? I am taking . 8 mgs of Florinef and 15mgs of > Midodrin. How high can I up my Florinef. As I stated, I have no > hypertensive fluxes and am still crashing off and on all day with > both blood pressure and sugar (besides all the severe > polyneuropathy). I am on prednisone very often. I am running fevers > that do not respond too much to Tylenol or ibuprofen. I use an > antibiotic instillation into my bladder, my lungs are clear, but as > usual my throat is coated and full of yuck and my ribs are very tight > (trouble expanding). The rigidity of muscles comes and goes and is > very painful. The spasms are pretty constant. > > > > I really need to find more ifo about max doses of Florinef. I'd > appreciate any info. and or info about alternative treatments I might > seek. I am not asking for professional advice but rather lay > experience : ) > > > > Thank you- Cheers! > > > > Waverley > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe@y... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Carol, Oh I get the itchy scalp,too, pretty sight but better than passing out you are right. I take in tons of gatorade and salt. I need the additional electrolytes so I drink a lot of this as well as tons of water and coffee. Seriosuly I drink a ridiculous amount. Great question though, Best wishes Waverely >>> cblanger@... 07/27/01 03:29PM >>> Waverley, The only side effect Rob has from the midrodine is scalp itch, which is mild to moderate. Certainly better than passing out! One more thought -- are you getting enough salt? The florinef will not work without it. Rob takes Thermotabs, a buffered salt tablet, 4 tablets a day. The Thermotabs can be hard to find, but CVS can order them for you or you can order them on CVS.com. Good luck and have a nice weekend, Carol & Rob > > Hi, > > > > I wrote a couple of weeks back that my neurologist had not gotten > back to me nor gotten back to my primary (GI specialist). I stated > that I still couldn't get a appointment for 8 weeks in her clinic (as > an emergency). Well, she still has not contacted us even when I > walked on over to her office and wrote a note and spoke with her > secretary. My primary, who recommended her and had trained with her > at Penn, is stunned and feeling as helpless as I. > > > > The immediate issue is just how much florinef in combo with > Midodrine can I take? I am taking . 8 mgs of Florinef and 15mgs of > Midodrin. How high can I up my Florinef. As I stated, I have no > hypertensive fluxes and am still crashing off and on all day with > both blood pressure and sugar (besides all the severe > polyneuropathy). I am on prednisone very often. I am running fevers > that do not respond too much to Tylenol or ibuprofen. I use an > antibiotic instillation into my bladder, my lungs are clear, but as > usual my throat is coated and full of yuck and my ribs are very tight > (trouble expanding). The rigidity of muscles comes and goes and is > very painful. The spasms are pretty constant. > > > > I really need to find more ifo about max doses of Florinef. I'd > appreciate any info. and or info about alternative treatments I might > seek. I am not asking for professional advice but rather lay > experience : ) > > > > Thank you- Cheers! > > > > Waverley > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe@y... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Waverely, Here are some websites for both: http://www.intelihealth.com/IH/ihtIH?t=11640 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*\ | http://www.intelihealth.com/IH/ihtIH?d=dmtSimple & c=213938 & p=~br,IHW|~st,8124|~r,\ WSIHW000|~b,*| Neither mention mixing them, but I know people do mix them. Have you read these websites on OH? http://ww2.med.jhu.edu/peds/cfs.html http://home.vicnet.net.au/~mecfs/general/nmh2.html (for physicians) http://www.emedicine.com/NEURO/topic609.htm Finally, I can not find the source, but I seem to remember that caffine is a no-no for OH - I could be wrong so don't take that as Gospel - but you may want to ask about it. Take care, Bill and Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Thank you very much Bill, I will check these out. Hope Charlotte and you have a nice weekend and can take advantage of the great weather we are supposed ot have : ) Waverley >>> b.werre@... 07/27/01 04:05PM >>> Waverely, Here are some websites for both: http://www.intelihealth.com/IH/ihtIH?t=11640 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| http://www.intelihealth.com/IH/ihtIH?d=dmtSimple & c=213938 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| Neither mention mixing them, but I know people do mix them. Have you read these websites on OH? http://ww2.med.jhu.edu/peds/cfs.html http://home.vicnet.net.au/~mecfs/general/nmh2.html (for physicians) http://www.emedicine.com/NEURO/topic609.htm Finally, I can not find the source, but I seem to remember that caffine is a no-no for OH - I could be wrong so don't take that as Gospel - but you may want to ask about it. Take care, Bill and Charlotte If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Yes, I have seen these sites and there is no info. about .2 mgs. UGH! Great info. though. I haev tried no caffeine and feel way way worse- I also use it to ward off asthma and migraiens, both which do help. Some people do react adversely to it, you are right. Plus it has other negative side effects. Thanks again though!>>> b.werre@... 07/27/01 04:05PM >>> Waverely, Here are some websites for both: http://www.intelihealth.com/IH/ihtIH?t=11640 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| http://www.intelihealth.com/IH/ihtIH?d=dmtSimple & c=213938 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| Neither mention mixing them, but I know people do mix them. Have you read these websites on OH? http://ww2.med.jhu.edu/peds/cfs.html http://home.vicnet.net.au/~mecfs/general/nmh2.html (for physicians) http://www.emedicine.com/NEURO/topic609.htm Finally, I can not find the source, but I seem to remember that caffine is a no-no for OH - I could be wrong so don't take that as Gospel - but you may want to ask about it. Take care, Bill and Charlotte If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Waverly & Bill, Somewhere (who knows where!) I actually saw a paper (co-authored, as I recall by Roy Freeman, who is Rob's doc) saying that caffine is good, and advising the consumption of 2 cups of strong coffee in the morning. Of course the problem is that caffine adds to dehydration and is also a bladder irritant, so the coffee has to be consumed with lots of water. Rob had virtually given up caffine because it made him jumpy, but now he has one cup in the morning - he doesn't feel well if he has more. One more thing that is different for each patient. Carol & Rob > Yes, I have seen these sites and there is no info. about .2 mgs. UGH! Great info. though. I haev tried no caffeine and feel way way worse- I also use it to ward off asthma and migraiens, both which do help. Some people do react adversely to it, you are right. Plus it has other negative side effects. > > Thanks again though! > > >>> b.werre@v... 07/27/01 04:05PM >>> > Waverely, > > Here are some websites for both: > > http://www.intelihealth.com/IH/ihtIH? t=11640 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| > > http://www.intelihealth.com/IH/ihtIH? d=dmtSimple & c=213938 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| > > Neither mention mixing them, but I know people do mix them. > > Have you read these websites on OH? > > http://ww2.med.jhu.edu/peds/cfs.html > > http://home.vicnet.net.au/~mecfs/general/nmh2.html (for physicians) > > http://www.emedicine.com/NEURO/topic609.htm > > Finally, I can not find the source, but I seem to remember that caffine > is a no-no for OH - I could be wrong so don't take that as Gospel - > but you may want to ask about it. > > Take care, Bill and Charlotte > > > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe@y... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Carol, That is probably what I remember - that caffine is dehydrating and that is why I considered it bad for MSA patients. Sorry, I goofed with the meds. I just saw a report today that teens who use drinking fountains a lot don't get enough liquids and become dehydrated. Take care, Bill and Charlotte -------------------------------------------------------- Carol Langer wrote: > Waverly & Bill, > > Somewhere (who knows where!) I actually saw a paper (co-authored, as > I recall by Roy Freeman, who is Rob's doc) saying that caffine is > good, and advising the consumption of 2 cups of strong coffee in the > morning. Of course the problem is that caffine adds to dehydration > and is also a bladder irritant, so the coffee has to be consumed with > lots of water. > > Rob had virtually given up caffine because it made him jumpy, but now > he has one cup in the morning - he doesn't feel well if he has more. > > One more thing that is different for each patient. > > Carol & Rob > > > > Yes, I have seen these sites and there is no info. about .2 mgs. > UGH! Great info. though. I haev tried no caffeine and feel way way > worse- I also use it to ward off asthma and migraiens, both which do > help. Some people do react adversely to it, you are right. Plus it > has other negative side effects. > > > > Thanks again though! > > > > >>> b.werre@v... 07/27/01 04:05PM >>> > > Waverely, > > > > Here are some websites for both: > > > > http://www.intelihealth.com/IH/ihtIH? > t=11640 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| > > > > http://www.intelihealth.com/IH/ihtIH? > d=dmtSimple & c=213938 & p=~br,IHW|~st,8124|~r,WSIHW000|~b,*| > > > > Neither mention mixing them, but I know people do mix them. > > > > Have you read these websites on OH? > > > > http://ww2.med.jhu.edu/peds/cfs.html > > > > http://home.vicnet.net.au/~mecfs/general/nmh2.html (for physicians) > > > > http://www.emedicine.com/NEURO/topic609.htm > > > > Finally, I can not find the source, but I seem to remember that > caffine > > is a no-no for OH - I could be wrong so don't take that as Gospel - > > but you may want to ask about it. > > > > Take care, Bill and Charlotte > > > > > > > > > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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