Hi everyone. I have been reading your posts for several months and need to introduce myself. I was diagnosed with PV Jak2 at age 65 and am now 73. Platelets high also. My treatments have been aspirin and phlebotomy every eight weeks if hematocrit is above 42 which it always is. Symptoms began about 2 years ago: heavy painful legs with bone pain and tingling feet, some fatigue, brain fog and frequent shortness of breath. Although my hematologist suggested taking Hydra many times, he didn’t push it and I refused as I feared side effects and thought I was pretty stable with treatments as is. But I moved recently and new heme is awesome and lovely. She has convinced me I need the medication as I am at high risk for thrombotic event at my age. I certainly would like to cut risk of stroke. But I still hesitate a bit because I want to get the new shingles vaccine (a two shot process over 6 months) which is largely unavailable right now.
Despite symptoms I’ve been leading a very active and fulfilling life. Hate to change that. I’ve read on this forum that many of you struggle with taking this chemo treatment.
So I’m open to hear your advice or experience or comments. Thanks so much.