Jak2 and Vitamin D3

Hi, how often do you do phlebotomy?

I go every other week. I was just diagnosed in September, I’m assuming if my numbers go down enough it will be less.

Do you mean lack of D3 or too much? I have not heard this. I was always told I was low on D from a young age.

I have Jak 2 and I am taking hydroxicarbate also known as poly Vera I would love to join a discussion group with similar condition I am 77 and female

Hi @mumma, Welcome to Mayo Connect. I see you’ve been diagnosed with Polycythemia Vera and would like to be able to connect with members who share this blood disorder.
Here’s a link to an ongoing discussion that you might find helpful.
Polycythemia Vera
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

JAK2: Mutations and effects
https://connect.mayoclinic.org/discussion/jak2-mutation-effects-and-questions/?pg=18#comment-737001

How are you doing on the mediation?

For six months I've been taking Vit D supplements after a deficiency discovered during annual wellness. My acute sensitivity to sun light has marked improved. I'm 2.5 yrs CALR ET, 1000mg Hydroxy daily for 1.5 yrs maintaining platelets below 600. My question is can I hope the D will improve my platelet issue?

I everyone, my name is Steve from Sydney Australia. I have just stumbled upon this site after spending an hour with my Hematoglist this morning. I have had PV since 2010. I am 60 years old. I have never really spoken to anyone about my condition except my beautiful wife. But after this morning I just feel that I need to share and start some serious researching. I have basically had my PV under control for the past 10 years but lately my platelet and white blood cells have risen from their normal highs and my doctor this morning wanted to start me on a new treatment (Peginterferon alfa-2a injections) to work in conjunction with my current regular medication which is Agrylin. But after researching over the past two weeks and our discussions this morning I am not sure I wish to proceed. Anyway, there is so much I wish to share and talk about, maybe another time. Just one thing she told me this morning that they (doctors) don't know what's causes the Jake 2 mutation. And I am interested in the Vitamin D 3 research. thanks, and take care everyone, steve

Hi Steve,
Welcome to this wonderful site. I have ET JAK2 and have found the site so helpful.

Since you are in the research stage I suggest you also look at healthunlocked.com. There has been a lot of discussion also on PV and Pegasys. It is a site based in the United Kingdom by MPN Voices but participants are from around the world.
Best wishes, Eileen

In response to @lindaw123 - I would think Vit D3 would only have an adverse reaction to any other medication you may be taking to stabilise the effects of having a JAK2 gene... I've been diagnosed with Polycythemia Vera and having the JAK2 gene since last year (2022) and am now taking Jakafi 20 mg to stabilise my high platelets counts, as well as stabilising my red blood cells. My own GP has just recently recommended taking D3 throughout the winter months: a middle-of-the-road dosage level.
[In case it helps, there is a "helpmate" to remind you when to take vitamins and/or supplements: only in the months with the letter R in them 😉 (ie mostly fall, winter and early spring)].

Thank you for the suggestion of Health unlocked. I joined also!!