goldicedance Posted December 26, 2009 Report Share Posted December 26, 2009 The Mayo Clinic (Jax) is very very reluctant to give procrit. The hemotologist told me that have virtually stopped giving it to people undergoing chemo except in certain circumstances. They have found the risks too great.Is anyone here on Procrit? Does your prescriber voice these concerns? Last I saw Dr. Grubb (june 2009) he was still recommending it at a pretty strong dose. Mayo will only give it to me if my hemacrit/hemoglobin (I get the two mixed up) is 14 or under.What have been your experiences? Quote Link to comment Share on other sites More sharing options...
persephone Posted December 26, 2009 Report Share Posted December 26, 2009 Hi Lois! Long time no speak, how are you?I've been on Epogen for 3.5 years now. I'm th eonly UK patient taking it for POTS.It's helped me a lot.BUT: I've had some flare ups recently, and have asked for my dose to be reviewed but no one seems to know what they are doing!I'm taking this extremely potent med with NO ONE to oversee my blood chemistry, my overall health AT ALL. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted December 27, 2009 Author Report Share Posted December 27, 2009 Hi, Persephone....How are you doing? Seems like you have made great strides, including a leap over the big pond lately.My Mayo cardio wanted a hemotologist to look after the procrit side of me. He is really, really, reluctant for me to have this drug. I only get 1 injection once a month (10,000 units-a baby dose). And, that still bothers him!He said it is strongly linked to strokes, heart attacks, and possibly malignancies. He indicated that the Mayo really only gives it to patients on chemo whose malignancies have metasticized. Wonderful!Perhaps you should ask to see a hemotologist? Who oversees your blood work?Good luck!Lois Quote Link to comment Share on other sites More sharing options...
flop Posted December 28, 2009 Report Share Posted December 28, 2009 In the UK it is mainly given to people with anaemia from chronic renal failure. Natural EPO production is controlled by the kidneys so when they go wrong you can get severe anaemia. Some people used to have to have weekly blood transfusions to keep their anaemia at a tolerable level - now they get EPO injections instead.Anything that makes the blood thicker will increase the risk of stroke. Epo increases the number of red blood cells produced to makes the blood thicker as well as raising blood pressure and increasing the amount of oxygen that can be carried by the blood. Potentially a very useful drug for POTS but needs some proper research and prescribing guides.Flop Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.