Radha Posted January 14, 2005 Report Share Posted January 14, 2005 hi, for those of you who have taken epogen, how long did you have to take it to get improvement and how did it help? and does it only help for those who have low red blood cells? because i dont have anemia, just low total blood volume and when i tried it few years ago for 3 months it didnt do anything for me, didnt raise my BP or make me feel better at all, no side effect either, but just wondering it its worth giving another try, but not if its only for anemia, thanksradha Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 14, 2005 Report Share Posted January 14, 2005 oops Quote Link to comment Share on other sites More sharing options...
Radha Posted January 15, 2005 Author Report Share Posted January 15, 2005 thanks stephanie for replying, and your reply has definately influenced me towards giving it another try, can you please tell me what dose you took that worked for you, what you started out with and how often you increased dose? i guess i will have to be more patient this time around if i take it, and did you have to get regular blood tests done while on it? did you also mention in an earlier post that you had to take IV iron to make the epogen work? i know my doc wont agree for that, radha Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 15, 2005 Report Share Posted January 15, 2005 steph is definitely the poster child for epogen and she is filled with great tips about it! i tried it and my blood levels always went above what dr. grubb preferred and then i would have to back off. i ended up discontinuing it b/c i didn't feel that i had much, if any, benefit...and felt that my hematocrit and hemoglobin were too high and not worth the risks since i wasn't feeling that much better on the epogen.i didn't really have any other side effects though, so in that sense it was really worth a try...i hope that you find relief from it...emily Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 15, 2005 Report Share Posted January 15, 2005 oops Quote Link to comment Share on other sites More sharing options...
briarrose Posted January 15, 2005 Report Share Posted January 15, 2005 I think that I'm the other Steph that is on Epogen. I've been taking it since November 2003. At first it didn't work because I was so anemic and Iron deficient it didn't work. That was a lot of pain to go through for nothing. When I saw Dr. Grubb again in the winter that year he said of course it wouldn't work without the Iron. I had been on oral Iron faithfully for over a year before that and yet my Iron continued to drop. They finally started me on IV Iron every week and after 3 weeks of Iron and Epogen my H & H started to increase. After my second month of the combined treatment I started to feel like a real human being again. I'm still on the combination therapy but now I get IV Iron every 3rd week. I get 10,000-20,000 Units of Epogen every week. I have a lot more energy and it has improved most of my symptoms. I hope this helps but for the record this was a huge turning point for me in my POTS symptoms. Quote Link to comment Share on other sites More sharing options...
Radha Posted January 16, 2005 Author Report Share Posted January 16, 2005 thanks so much for replying, is it absolutely necessary to have the blood tests done? coz i have a very hard getting any blood drawn and even little blood loss makes me much worse, if i take the lowest dose do i have to worry about the hematocrit levels? i really appreciate all the info,radha Quote Link to comment Share on other sites More sharing options...
Radha Posted January 16, 2005 Author Report Share Posted January 16, 2005 i forgot to say i never saw a hematologist and theres no one in local area, and i cannot travel at all, and i'm also very skinny, only 100lbs i think and 5'9, thanks again, radha Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 16, 2005 Report Share Posted January 16, 2005 oops Quote Link to comment Share on other sites More sharing options...
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