Jak2 and Vitamin D3

Posted by lindaw123 @lindaw123, Dec 13, 2021

I read there is a study of affects of Vitamin D3 and the JaK2 mutation.
They have found correlation w D3 and bone morrow??? Anybody up on this?

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I have PCV and Jak 2 positive. At the moment I am seeing two oncologist one in Florida when I am there at a cancer Institute, and one up in Wisconsin when I am there. Neither one has mentioned taking any supplements at this time. I take 500 mg of hydroxy, three times a week, and a baby aspirin every morning. I’m lucky I feel like 1 million bucks. Until they bring it up I’m not going to upset the Apple cart.

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Last year my primary had me tested for B12, so now that's on my daily intake

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@jerrlin

I have PCV and Jak 2 positive. At the moment I am seeing two oncologist one in Florida when I am there at a cancer Institute, and one up in Wisconsin when I am there. Neither one has mentioned taking any supplements at this time. I take 500 mg of hydroxy, three times a week, and a baby aspirin every morning. I’m lucky I feel like 1 million bucks. Until they bring it up I’m not going to upset the Apple cart.

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Ditto! I’m recently diagnosed with the same one year ago and am on the same regimen. I’m hoping to keep the dosage low. In the beginning it was 7x a week and I felt the side effects. So much better with the lower dose. Fingers crossed for us both!

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Same situation with me….. Missouri in the summer, Florida in the winter. It has been suggested several times about hydroxyurea. My hair is already thin and I don’t want it to get any thinner. If it would make me feel stronger, I
m i g h t consider it. I am exhausted and used to be willing to go shopping anytime. That enjoyment is gone, due to my weakness, I must use a walker if I go into a store, or a mobility cart, if available. I rarely have to have phlebotomies anymore with my hematocrit low to mid 40s. Neither hematologist offers. Any suggestions for my lack of strength except “exercise”
How is that possible when I am so weak I can barely walk 50 feet without exhaustion? I do ride an adult trike daily in Florida. I take multiple naps a day sometimes, but feel they are necessary. I have asked about a support group, but none are in either area. Fatigue is constant, Anyone have suggestions?

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I have essential thrombocythemia, with JAK2 gene. Diagnosed in 2022 after a emergency gall bladder operation. I've been on Hydroxyurea 500 mg 2x a day. I am asking if anyone has been warned against the RSV vaccination. I was, by a medical professional. It was also suggested that there was is a possible link to the thrombocythemia and the Covid vaccinations?? Has anyone else heard this? My insurances do not cover the RSV vaccination and the cost is $350+ so I'm not in any hurry to get it. However, just had a cousin die from this infection. He did have a compromised condition of being overweight. Not looking for conspiracy theories just some information/insights from those of us in the same boat. Thank you.

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I have taken Bcomplex since 1970
Recently my dr told me to lower the dose to every other day. It was too high
I have Jak2 for high platelets about 2 years on Hydria 500 3x week.
Platelets good now

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@blkalydy973

I have essential thrombocythemia, with JAK2 gene. Diagnosed in 2022 after a emergency gall bladder operation. I've been on Hydroxyurea 500 mg 2x a day. I am asking if anyone has been warned against the RSV vaccination. I was, by a medical professional. It was also suggested that there was is a possible link to the thrombocythemia and the Covid vaccinations?? Has anyone else heard this? My insurances do not cover the RSV vaccination and the cost is $350+ so I'm not in any hurry to get it. However, just had a cousin die from this infection. He did have a compromised condition of being overweight. Not looking for conspiracy theories just some information/insights from those of us in the same boat. Thank you.

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I have not heard about a link between JAK2 and the COVID-19 vaccinations. When my doctor told me I had the JAK2 genetic mutation I thought I was going to get superpowers like Spiderman. No sign of superpowers yet after 6 years of being diagnosed. I've been on Hydroxyurea 500 mg 2x a day then lowered to 1x a day. Platelets are under control now. I had Polycythemia Vera (PV) long before the COVID was unleashed on the world so I am not sure of a link there. I will be going to my doctor soon and will ask about the RSV vaccination. I wish you the best.

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