sfr100 Posted February 11, 2006 Report Share Posted February 11, 2006 hI!I READ ABOUT THIS MED AS BEING AN ALTERNATIVE TO THE VOLUME BOOSTER FLORINEF AND WAS WONDERING IF ANYONE HAD EVER BE PRESCRIBED THIS. IT SUPPOSEDLY HAS TO BE TAKEN BY A SHOT.ANYONE HEARD OF WHETHER IT IS EFFECTIVE? EVERYONE SEEMS TO BE ON FLORINEF. SUSAN Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted February 11, 2006 Report Share Posted February 11, 2006 Hello, I really don't know anything about this drug, but I will let you know that I took florinef and my blood pressure went SKY HIGH!! I mean we are talking about heart attack number, for a 19yr old. It was CRAZY, and I didn't feel good at all. , Nicole Quote Link to comment Share on other sites More sharing options...
Meliss446 Posted February 11, 2006 Report Share Posted February 11, 2006 Yes, I have heard of it. In fact, a doctor in New York that I went to who was a POTS specialized said he recommended it for me because I had a very low blood volume even on florinef. The two drugs act a little differently. Florinef helps your body retain salt and fluid better so that you can increase volume that way. I think that erythropoietin actually increases the red cell mass. Along with the increased volume, I have heard that it also seems to have a vasoconstictive effect. I have not found a doctor here who is familiar enough with it to try it though. I know I have read about some people trying it and having tremendous success with it. But it is very expensive and does have to be injected, so I think it is harder to get than florinef. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted February 11, 2006 Report Share Posted February 11, 2006 hi - i don't think we've "met" yet as i've missed welcoming some (or all:-() of the new folks recently. so first...welcome re: erythropoietin, you may want to do a search for "procrit" which is it's brand name; there have been a number of discussions on it in the past.melissa (the other one...i'm a melissa too) is correct about the mechanism of action for e-po/procrit. and also about the difficulty of getting the med. some find it easier/harder than others but often there are roadblocks - from insurance and/or in terms of a doctor/hospital being willing to administer the injections (b/c while studies have been done it is not an FDA-approved treatment for dysautonomia).it also has to be monitored quite carefully (with bloodwork), esp. when first starting. i actually just started the shots myself two and a half weeks ago and posted regarding my excitement; while dr. grubb had wanted me to give it a shot months ago i needed a local doc to monitor/administer the treatment & had more than a little difficulty getting that to happen. i haven't had any problems with the shots to date but it hasn't been long enough to tell if i am going to benefit from them.i know of two people on the board who have been on procrit with a good deal of success, a few that have tried it & it either hasn't helped or has caused side effects that caused them to stop, and several who are actively pursuing giving it a try. generally it's not a "first line" treatment though, meaning that i've never heard of someone getting procrit as a first or second treatment (i.e. before trying other meds).i'll definitely be letting you all know though if (when:-)) i start to feel the good effects.hope this helps, melissa Quote Link to comment Share on other sites More sharing options...
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