Jump to content

Question about procrit/epogen


Lukkychrm42

Recommended Posts

So like many of you I have low blood volume and have been discussing the use of procrit with my dr. for a long time. I have low cell mass and low plasma, but my hematocrit is 40, so the cell mass is just slightly lower. If I start on the procrit, i can theoretically keep using it as long as my hematocrit doesn't go above 50. But since I have low plasma volume, will building up my cell mass through procrit cause the plasma to increase by association, or how else do you raise plasma volume, too? Sodium and water hasn't done it so far, and you can't take DDAVP/desmopressin along with procrit. Since both are low, even when my hematocrit reaches 50, I'll still be hypovolemic. Maybe I'm just having too much brain fog, but do you know what I mean?

Thanks!

Link to comment
Share on other sites

well i'd guess that protocol for giving it to chemo patients differs from others, and my doctor was the one who brought it up, not me. I'm obviously no doctor, but the clotting would depend not on total volume but on the hematocrit, so the plasma keeps the blood thin enough not to clot when there is as much plasma as cell mass or more. So if a person is dehydrated and has a low plasma volume, maybe that would mean he's more likely to have problems with clotting... unless like us he's got low plasma volume AND low cell mass volume. Does that make any sense?

Link to comment
Share on other sites

re: clotting, there's also a clotting factor that plays a MAJOR role. not saying other things can't affect the situation, but the mechanism of clotting is more complicated than blood volume, plasma volume, or any other one or two things....

lauren, i'm confused/curious re: your comment about DDAVP. different doctors obviously have different thoughts/opinions but there is no mandate that procrit cannot be administered in conjunction with DDAVP. i got my forth procrit injection today and have been on DDAVP since my trip to vandy in may. i only take the DDAVP at night but all of my docs know i'm on both including my hematologist & dr. grubb and no one has said anything about it being problematic. what was the reason you were told for why you cannot be on both?

re: some of your other specific questions about blood composition...i really don't know the answers. i even tried to do a bit of research too to no avail...though i don't know if i know specifically what i'm looking for :) .

lois, first i'm thinking you posted a similar question (re: blood clots) awhile back that i had meant to respond to but never had a chance...sorry! but about blood clotting & procrit....

yes, compared to not being on procrit, the risk of blood clots increases. it also does on birth control and for other reasons. and like lukky said, the parameters for the use of procrit are definitely different for POTS/PAF that they are in other patient populations (cancer, kidney failure, etc.). some docs are not willing or able to think out of the box.

even though dr. grubb has wanted me on procrit for months now finding a local doc who was willing to jump on board was more complicated, partially b/c of the risk involved. it is NOT risk free. no meds are, but as my mom has put it, my blacking out left and right is not exactly risk free either...as evidenced most dramatically by the fact that one such blackout directly caused me to have to have a cervical fusion.

so....for me i'm willing to take the risks in order to hopefully gain a better quality of life. we're not taking them blindly (i have blood work every other week, we started with a small dose, etc.) but we know they're there.

and in regard to some of the more specific blood composition questions, i'll ask more specifically both when i see dr. grubb in two weeks & when i see my hematologist the week after that.

B) melissa

Link to comment
Share on other sites

re: clotting, there's also a clotting factor that plays a MAJOR role. not saying other things can't affect the situation, but the mechanism of clotting is more complicated than blood volume, plasma volume, or any other one or two things....

lauren, i'm confused/curious re: your comment about DDAVP. different doctors obviously have different thoughts/opinions but there is no mandate that procrit cannot be administered in conjunction with DDAVP. i got my forth procrit injection today and have been on DDAVP since my trip to vandy in may. i only take the DDAVP at night but all of my docs know i'm on both including my hematologist & dr. grubb and no one has said anything about it being problematic. what was the reason you were told for why you cannot be on both?

re: some of your other specific questions about blood composition...i really don't know the answers. i even tried to do a bit of research too to no avail...though i don't know if i know specifically what i'm looking for :) .

lois, first i'm thinking you posted a similar question (re: blood clots) awhile back that i had meant to respond to but never had a chance...sorry! but about blood clotting & procrit....

yes, compared to not being on procrit, the risk of blood clots increases. it also does on birth control and for other reasons. and like lukky said, the parameters for the use of procrit are definitely different for POTS/PAF that they are in other patient populations (cancer, kidney failure, etc.). some docs are not willing or able to think out of the box.

even though dr. grubb has wanted me on procrit for months now finding a local doc who was willing to jump on board was more complicated, partially b/c of the risk involved. it is NOT risk free. no meds are, but as my mom has put it, my blacking out left and right is not exactly risk free either...as evidenced most dramatically by the fact that one such blackout directly caused me to have to have a cervical fusion.

so....for me i'm willing to take the risks in order to hopefully gain a better quality of life. we're not taking them blindly (i have blood work every other week, we started with a small dose, etc.) but we know they're there.

and in regard to some of the more specific blood composition questions, i'll ask more specifically both when i see dr. grubb in two weeks & when i see my hematologist the week after that.

:P melissa

Regarding the DDAVP, I was looking it and procrit on the web, and the drug info I found said there could be interactions between them... it didn't say what kind, I just assumed that that meant the combo was out... maybe not??

Good that there's more science involved that I don't know about... :lol:

I plan to talk about this with Dr. Abdallah, I was just trying to get other opinions/experience from you all since I don't see him for another week. Thanks though!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...