Monday, March 9, 2009

CHOIR and CREATE studies - EPO

I am not in a position to discuss the technical aspects of these
studies but thought I'd pass on some info related to my son's
experience with EPO that is somewhat related. At first, his neph
referred him to a hematologist because he had a familial anemia as
well as the anemia of CRF. This guy was determined to "cure" the
anemia, but what we discovered was that as Ryan's hematocrit
approached (and often went beyond) the normal range, his blood
pressure would destabilize. He did not have a history of hypertensive
problems but was on lisinopril for the kidney-protective aspects and
as kidney function declined his natural bp did creep up some. When his
hematocrit was in the normal range as a result of EPO injections, the
blood pressure went way up and caused headaches, difficulty sleeping,
etc. Then the hematologist would cut back on the EPO and we'd have to
wait for Ryan to crash, hemoglobin-wise. It was a whip-lash pattern of
highs and lows, and I got frustrated with the hematologist's attitude
and ask the nephrologist what he would do if he were managing the EPO.
He had a more conservative, steady even if mildly anemic approach, and
my son quit the hematologist and let his neph manage the EPO with much
more satisfactory results. Although you'd like to get rid of the
anemia, a mild level of anemia seems to avoid the high and fluctuating
blood pressure issue, and the subsequent damage caused by that. What
my son also found was that he adapted to the slightly anemic level
maintained by the more conservative approach to EPO dosage and was
able to be quite active. He is not a high-endurance athlete but does
ski and hike (including 14'ers - we live in Colorado were hiking above
12,000 ft. is readily available).

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