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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. :) ,


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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.

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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

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