Jak2 and Vitamin D3

Hi Linda- I’ve read studies showing vitamin D deficiency and blood clotting correlation in Jak2 mutations, thrombocytopenia and haematological malignancies.

Hello @lindaw123

I appreciate this thoughtful question. I did some research online and found the results of a research study on this topic at the National Insitute of Health website. Here is the link,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7053540/. The article is titled: Vitamin D Deficiency and Janus kinase 2 V617F Mutation Status in Essential Thrombocythemia and Polycythemia Vera."

If you read the study and especially the Conclusion it says:

"Conclusion
There was a remarkably higher prevalence of vitamin D deficiency in JAK2 mutation-positive ET and PV patients. These patients should be carefully evaluated for vitamin D deficiency. More studies are required to further investigate the association between JAK2 and vitamin D.

Keywords: vitamin D deficiency, chronic myeloproliferative neoplasia, polycythemia vera, essential thrombocythemia"

How are you feeling with your diagnosis?

Not sure I understand that question. About a yr and 1/2 ago. My Hgb/HCT was found to be fairly high in Routine blood work thru PCP.
Covid just began, he was retiring and basically his last day in office and this was a Virtual visit. No idea what Polycythemia Vera was. He told me it was very treatable thru Phlebotomy and referred me to Oncologist. I had Phlebotomy treatments every two weeks for 2 months which brought my HCT down. So have been on every 2 months ever since.
There seemed to be a change in necessity after I refused HCTZ as a treatment for Hypertension. I read dehydration can be a factor. I am horrible at drinking enough water.
Which continues daily.
I have read that PV is autoimmune disease.
I also have Scalp Psoriasis which is also Autoimmune disease.
I have read that some
PV meds were used in past for Psoriasis.
I do not use any psoriasis medicines just lotions and hydrocortisone 1%.
My Oncologist has mention hydroxyurea but will begin this only when Phlebotomy isn't working. He has even mentioned a port and my new PCP is not in favor.
So I'm always researching Psoriasis home remedies and my eye caught something about Vitamin D3 and Psoriasis. So I got the idea to search if D3 also helps PV.
Probably 10 yrs ago ish I saw a Neorologist because my attention span has always been an issue and I have had insomnia forever. He had me get bloodwork to check D3. Told me it was low and to start OTC D3. He returned me back to my PCP.I did that. Not much if any help and then he suddenly left practice with night mare stories about him being a quack bla bla bla. So I assumed my D3 recommendation was quackery as well cause it didn't help me sleep.
So now im wondering if it worsened??? Has it gotten so low its created my Jak2 mutation.
I requested records from Neuro to take to Oncologist. I see him in about a month.
I hope my diagnosis is wrong as would anyone. Thank you for your time.

Good morning- Your comments are right on target. I need some direction as I seek clinical trials to eliminate hydroxyurea from my life. "More studies are required to further investigate the association between JAK2 and vitamin D". Are there any trials that use Vitamin D as a cure for JAK2 gene cancer that makes platelet levels too high? Any thoughts or additional information is much appreciated. Have a great day. Regards, Dave

Hi Teresa,
Thanks for the link to the article from NIH on Vit. D deficiency and Jak2 mutation. In looking at the data regarding ET, it seemed that the Vit D deficiency was highly correlated with the use of hydroxyurea. Maybe I'm reading the numbers wrong, but it looks like the deficiency could be related to the hydroxyurea use and not the Jak2 mutation. Just wondering.

Recently been diagnosed with PV and blood testing showed low vitamin d. Never took one pill of hydroxy so maybe there is a correlation. Actually I was diagnosed in September of 2018 but didn’t do any treatment at all until September 2021 when I had a stroke. That got my attention but phlebotomy for a couple months brought my numbers back down.

Welcome to the group, Michael.
You may wish to connect with other members talking about polycythemia vera (PV) here:
- Polycythemia Vera https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

What symptoms or complications are you managing? Are you considering treatment?

I was diagnosed with PCV 3 months ago, but had itching symptoms since 2019. I tested positive for Jak 2 and a bone marrow biopsy confirmed it. I am on 2 baby aspirin a day and phlebotomy’s as needed. I’m wondering if anyone has found relief for the itching and minor fatigue. Unless chemo would slow this disease, I’ll stay with my current regiment. Any advice?

Jakafi has helped me. I do have fatigue occasionally but not nearly as bad as before.

Thanks, I hope to use medication as a last resort.