Has anyone tried procrit-if so did it work?

Discussion in 'Fibromyalgia Main Forum' started by LBV, Aug 5, 2003.

  1. LBV

    LBV New Member

    My sister had a Chromium 51 test that revealed low blood volume. She has been on midodrine which helped a little. Her doctor now says she is a good candidate for procrit. She was wanting to hear some experiences from others who have tried it. Thanks! Kimberly
  2. Dlebbole

    Dlebbole New Member

    But I want to know too. Bump!
  3. JenniferAnn539

    JenniferAnn539 New Member

    Kimberly,
    I just heard about Procrit being used in on CFIDS patients in one of my chat groups.
    I am very interested to hear any feed back on whether this drug is helpful in elevating some of the fatigue.
    Jennifer
  4. LBV

    LBV New Member

    Thank you everyone for your posts. I am going to convey what we were told as far as her being a good candidate for procrit. Remember, all doctors are different, but this is what we were told and how we understand it. My sister started on Midodrine, and her doses were upped to the max. It did help a little. Since she had low blood volume, he then checked her blood(venous sample, not fingertip) to see if she was anemic. She was not. "That was good" he said, because in order for the procrit to work, there has to be sufficient iron in your bloodstream to create red blood cells. There is much more to blood than red blood cells. And much more to anemia than red blood cells count, (ie hemoglobin (Hb), a red, iron-rich protein in blood cells). The question I have always wondered, will Procrit increase volume because of increased red blood cell production? Now, there are clotting issues and dangers in prescribing a drug for which it is not approved. Hence, I am sure because of potential dangers of doing this, and something going wrong, doctors insurance carriers would be asking, why did you prescribe a drug for something that it is not approved for? But, don't we all appreciate those doctors who go out on a limb to try something that has helped some and could potentially work for others. It is also expensive, and requires frequent bloodwork to moniter the dose. Since it is not approved for this, insurance may not cover it. This of course will not stop us, were there is a will, there is a way. I am so excited that she gets to try it I was crying when we received the letter. I just want her to feel better!
    Please understand that I am not disputing what you are saying, just passing on what we were told in hopes that it might help others. I will keep everyone posted on her progress.

    Thanks!
    Kimberly

    PS. There was also a drug, a hormone, DDVAP. It is a nosespray that slow down urine production. That seems to be a big issue with my sister, especially when she does try to increase her fluid intake. The side effects of this medicine are increased blood pressure due to increased blood volume. Boy, wouldn't my sister love to have that side effect! This is something else I am investigating for her, but as her doctor said, one thing at a time, or we do not know what is working..

    [This Message was Edited on 08/08/2003]
  5. LBV

    LBV New Member

    Just bumping. boy this board moves fast but am SO impressed with the info and the carring.

    Thanks Kimberly