[Lisa V]

Joan,

I had the same questions about EPO when my husband was on Procrit. Obviously if your husband's Hgb were to drop to the point of needing transfusions, it would be an indication that it had stopped working. Apart from that, it can be difficult to tell. Even our doctor couldn't provide us with a satisfactory answer as to whether it was really doing Ken any good or if he was just responding to ATG. Since our insurance didn't cover the cost of the shots, I very much wanted to find out if it was really worth it, so we tried skipping the injections for a few weeks. We got our answer right away when his Hgb dropped significantly (not the little normal fluctuations that we had been seeing up to that point).

I too was concerned that it might stop working, based on some of the comments here. Also that it might make his kidneys less inclined to do the work themselves, or that the use of growth factors could increase his chances of transformation or developing some type of cancer. I expressed this to his doctor, who told us he had a patient who'd been on EPO for 10 years with no problems, so he didn't think it was a major concern as long as he wasn't showing any indication of difficulties. Fortunately for us, Ken was able to reduce his dose and then discontinue it altogether once his Hgb started to hold its own, but he was on it for close to 4 years with no problems. I realize this is a different situation than yours since Ken was gradually responding to the ATG, but I do think it's possible to remain on EPO for longer periods of time without issues than what I've heard some people claim.

Hope this helps,