Polycythemia vera (PV): Does altitude matter?

Thanks for the quick response! My husband's issue is under control. He goes for testing every few months now. So the HU works for the blood counts, so it is effective. But he seems to always feel tired. Of course, he is getting older as we all are, so it may just be coincidental to taking HU. He finally seems to have the dosage correct, so that has helped with stability. His energy levels have not returned much in my opinion but then again, they may not.
Too bad that it is more likely coincidental. We loved Colorado and I would move back in a second if I thought it would help.
I am just looking for more information on updates for treatments. The CRISPR possibilities are exciting as they may be able to actually reverse this completely. Only time will tell.
Thanks again

@cmchesh Hello. Welcome. I’m 77 (until next week and it counts!) and was diagnosed with JAK2/PV about five years ago. My GP of over 40 years told me to see a hematologist asap (I had just moved from CA to AZ. My GP said absolutely nothing to suggest it was life threatening or cancer! He told me the treatment was phlebotomy? My first clue was “Cancer Center” on the sign at the hematologist office! And, the hematologist never mentioned the HU was chemo. When I read the warnings on the label I called it my “poison pill”!
But, the HU and phlebotomies have got it under control.
All things considered, there are worse drugs.

@cmchesh I can identify in some ways to your thought process. Though the "science" says otherwise, I too think that warm climates and heat increase my RBCs. I can go all winter and spring with no phlebotomies, then as mid-summer and early fall arrive, I need one or two. That and getting acupuncture. That seems to stimulate production for me.

I've lived in FL for 20+ years and only got diagnosed with PV 2 year ago. I don't think it was to do with FL or FL would have a huge % of cases lol.

But I do think, not scientific but a spiritual perspective, that humans evolved for their climate zones. Many of my fellow Caucasian friends with issues say how much better they feel when they travel far North! It's a funny thing to think about if anything.

@cmchesh I read the report you are referring to about the JAK2 switch. I've mentioned it to my doctor. He told me I wasn't a mouse.... Something else you'll come across is Besremi, which can be better in some ways than HU. While they say I need to get worse first, I think being educated on this and talking with your doctor is paramount. While my MPN specialist knew about Besremi, my hematologist did not. I'm only 48, but I do use AI to research and build vitamin templates that mimic the effects of Besremi. But I do look forward to that day when they release the genetic switch code for JAK2!

Referring to the HU as poison is amusing to me because my wife calls my HU meds “Poison Pills “.
I think it’s due to the warnings on the label about not handling it. My doctor experimented with dosage levels to where I no longer needed phlebotomies. I’ve been on it for about 4 years and have not had any problems with it since I started.

When I first heard I had polycythemia Vera JAK 2 positive (Im sure everyone knows you can have polycythemia without the JAK2) however, I was very angry and depressed as I had just had breast cancer..overtime I decided to change my attitude which took time but it's made a huge difference in m quality of life..