Give it a try

[Sunnylesser]

Hi

I was diagnosed a year ago sort of out of the blue never having any issues! Routine blood work led me down the rabbit hole. I am 70 a runner , marathoner and very athletic !!!! I wanted to convince my doctors that because I was in great shape I didn’t need it. .I went to 3 PV specialists at Yale, Mass General and Sloan Kettering . They all said the same thing: aspirin and hydrea.

I have done well on the medication , no real side effects to speak of , and when I feel tired I take a nap.

This is scary and new but I did it and blood work has been pretty stable now. I get blood drawn about every three months.

Best of luck !!!!!

[Ebot]

Really glad the pills are working their magic! Keep on running! Wishing you all the best.

[Meatloaf9]

Hi, you certainly have been to 3 of the best medical facilities in the US. Sounds like you must have a correct diagnosis. Did any of the hematologists mention treating your PV with Pegasys or Besremi. It seems to me that most of the latest research indicates that the interferons are the only drugs that can alter the course of the disease for the better, though not in everyone. I am 72 PV and take HU (9 per wk) blood counts controlled well so far only been on it for 1 year. No problems with it so far. I see my mpn specialist this month and hope to discuss interferons with him. From what I have read, interferons have a better long term track record if you can tolerate them. Keep up the physical activities, I think they are very important, especially at battling fatigue. I had no fatigue for the first 3 years but now in my 4th or 5th year it is increasing monthly. Best to you.

[gilded]

Hello! Mine was also a very recent diagnosis and as a result of a blood test, the first in more than 30 years. I’ve always been fighting fit, not even a sneeze in years, but out of the blue this issue struck . However, apart from the jabs and the boring regular blood tests and haematology consultations, I feel fine. No meteor wipe out!