goldicedance Posted October 18, 2005 Report Share Posted October 18, 2005 Hi to all you POTSIES in cyberland. I know that one if not more of my friends here get procrit shots. Does you doctor test your hematocrit level before you get the shot? As many of you know, I am on chemo. My oncologist and my cardiologist won't give it unless hematacrit below 40 due to the possibility of blood clots. What has been your experience with this drug? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 18, 2005 Report Share Posted October 18, 2005 Hiya, I don't use procrit, and can't remember who here does so... but here's the list of posts on the general forum that have the word "procrit" in it somewhere.\http://dinet.ipbhost.com/index.php?act=Sea...ighlite=procritNina Quote Link to comment Share on other sites More sharing options...
lalalisa Posted October 18, 2005 Report Share Posted October 18, 2005 Hello,I'm also looking into taking Procrit. I'm scheduled for a blood volume test in November to determine if I need it and also try to convince my insurance co. to pay for it. My understanding is that a normal hematocrit level doesn't necessarily mean that your blood volume is OK. (Meaning you could still have low bv with normal levels) (I do not know about the risk of blood clots)Hopefully some others on the forum will know more than I,Lisa Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 18, 2005 Report Share Posted October 18, 2005 heya - i'm sure you'll figure it out soon enough if you look through the past posts that nina posted, but steph's the resident procrit gal. there may be others too, but she knows A LOT about it, has had success with it in the past, etc. she's had a busy last few weeks so may not post a reply right away but you can "talk" to her vicariously through her past posts. but i am guessing that she doesn't get her hem checked every time she gets a shot as she gives herself shots at home...and now i'll stop putting words in steph's mouth before i say something totally incorrect!!i may be embarking on procrit myself but am not too well versed yet....i do know that blood levels have to be monitored VERY carefully to avoid problems. dr. grubb couldn't start me on it solely for that reason after my visit 2 weeks ago; i didn't have docs here in cleveland to follow/monitor me on it closely enough. melissa Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted October 19, 2005 Report Share Posted October 19, 2005 Hello,I'm also looking into taking Procrit. I'm scheduled for a blood volume test in November to determine if I need it and also try to convince my insurance co. to pay for it. My understanding is that a normal hematocrit level doesn't necessarily mean that your blood volume is OK. (Meaning you could still have low bv with normal levels) (I do not know about the risk of blood clots)Hopefully some others on the forum will know more than I,Lisa<{POST_SNAPBACK}>That's right. I have a hematocrit level that's almost normal, but my plasma and blood volume are very low, and the doctors are still talking about Procrit when I get back to the States. Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 19, 2005 Report Share Posted October 19, 2005 HiI know that I'm one of two "Steph's" that get the Procrit/Epogen injection. My injections are normally weekly. Yes, I have to have a Hematocrit drawn before each injection. Dr. Grubb likes to see POTS patients with a Hematocrit of 45-50 which is well above normal. I've talked to my primary here in my home state and our goal is a HCT of 45, I'm too nervous to go to 50. So I get my blood drawn and they call me back the same day and tell me whether or not I need to come in for a shot. I started my injections 2 years ago next month (November 2003.) However for the first 3 months that I got the injection my blood count didn't increase at all. Fortunately I saw Dr. Grubb in Late Jan/Early Feb and he told me that I didn't have any iron left in my body, my iron stores were completely depleted and that Iron was necessary for Epogen to work. I had been on oral Iron every day for 1-2 years before that but it didn't improve my levels. They finally started me on IV Iron every week, after several months they spaced out my IV Iron to 2 weeks and now I get it every 3rd week. Epogen is a very, very painful injection that hurts from my hand to my shoulder. Dr. Grubb prescribed EMLA cream to numb my arm 30 mins before my injection and let me tell you that it was the best thing The combination of Epogen & Iron have been quite incredible to my health! I was so fatigued that I was barely able to function and I was living minute to minute or day to day before and now I have a lot of my energy back. I'm not 100% but I'm extremely happy about the improvement! This was something that worked very well for me.If you have any other questions, please feel free to ask.thxSteph Quote Link to comment Share on other sites More sharing options...
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