POLYCITHEMIA VERA

I was diagnosed with PV in 1983. For a long time it was controlled with phlebotomy, but became out of control because of exceeding the 8 times a year rule. I was then put on Hydrea and 90 days after starting that I had a reaction in the form of a grand mail seizure. For a short time I went back to phlebotomy.

Then I read an article about Pegasys being used "off label" for control of PV. After a lot of reading and research I mentioned it to my Hematoligy Oncologist. Without hesitation he said yes and wrote for 180 mug weekly. I stayed on that until there was a show of the CBC numbers dropping. At that time he lowered the dose to 90 mug then 45 mug then 30 mug. The drug worked so well that it lowered the numbers below the lower limit especially the Hgb. At that time he took me off the drug. Now, being off Pegasys for 90 days the numbers are raising to within normal limits and I have a CBC every 3 weeks just to check the progress.

As for side effects of the drug, they are different for each one of us, my greats side effect is fatigue sometimes pretty great sometimes not. It's a fact of life and one learns to deal with it For me I start my day as normal and when I get tired I stop to rest or take a nap etc.

For those new to the disease or Pegasys, talk to those on this blog for support should you feel the need. Having PV, which is a form of cancer, it's not the end of the day. It's another stumbling block that one has to learn to deal with.

Paul

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