polycythemia vera

Posted by rgreen @rgreen1, Jan 4, 2012

Just found out I have PV would like ti discuss with others with this diease

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I was diagnosed about 15 years ago. Had phlebotomies (sp?) with one dr; now I’m on Hydroxyurea with another. You?

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@bg207

I was diagnosed about 15 years ago. Had phlebotomies (sp?) with one dr; now I’m on Hydroxyurea with another. You?

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Hi, I found out about my PV thru blood work I had no symtoms platelets 1 million,First Hem Dr.
wanted togive med. because I was’nt having any systoms and my age, (47) went for second opinon
Hem put me on Hyrea,I’m worried about long term use of this med have you had any problems taking it? I;ve been on it for 4 weeks

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@bg207

I was diagnosed about 15 years ago. Had phlebotomies (sp?) with one dr; now I’m on Hydroxyurea with another. You?

Jump to this post

I’ve been taking the same med for 9 years with no problems.

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@bg207

I was diagnosed about 15 years ago. Had phlebotomies (sp?) with one dr; now I’m on Hydroxyurea with another. You?

Jump to this post

I have had poly V for three to five years. Phlebotomies keep hematocrit in order but recently needed surgery for hernia and platelet count is too high. I can not take hyroxyurea (when I did for 30 days w/o side effects really worked well but then I got flu like conditions and very hight temps and had to stop using) We have tried Busuflan (no luck) and now am going to take anagrelide to see if we can control high platelet count. Everything I am told about hydroxyurea is it works great and the Doctors I have talked with think it is a good drug. Wish I could take it.

REPLY
@bg207

I was diagnosed about 15 years ago. Had phlebotomies (sp?) with one dr; now I’m on Hydroxyurea with another. You?

Jump to this post

diagnosed three years ago but can see from blood work that I had it a couple years before. Have been with same cancer center in GF ND from start and recently to Mayo to try have surgery. Need to get platelets under 400 and I am around 800-950

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