A Blip in time!

[Barney50]

I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium.

Because of the blood calcium, I was recently diagnosed with hypercalcemia which led to a further diagnosis of hyperparathyroid disease. I have a full neck scan with contrast scheduled in a few weeks and then surgery sometime in September. The scan is to determine which of the 4 parathyroid glands will need to be removed.

My question: I am currently taking Vit D3 to help calcium go to my bones and hopefully prevent kidney stones. I was supposed to take Vit K also but have been unable to find any information about its effect on polycythemia and Jakafi. My MPN specialist has been unable to find clear guidance.

Has anyone had experience with Vit K? Thank you!

[ainslie]

Barney

Congratulations on remission, do you think the Jakafi caused that?

Re Vit K, I am no expert on the subject but some Vit K can increase clotting, possibly K1, I have PV and take k2 ,108mcg since 10 years. Best check carefully with an open minded doc before taking anything. I say opened minded because some Haems say no to any vits, not because they may cause issues but often they just don’t know about them so just say no anyway.

[Barney50 in reply to ainslie]

Thank you for the information - the endocrinologist was the one who wanted me to take the Vit K to help with calcium absorption into my bones. Finding information about interactions of Jakafi and Vit K has been difficult.

I am sure Jakafi worked for me. Just before diagnosis, when preparing for knee replacement, my hematicrit was 71 - quite a shock.

Once I started with testing and and then treatment in November, 2019, I had phlebotomy for about 5 months, then hydroxy for 2 months - was unable to continue its use because of a major side effect - fungal infection. I have been on Jakafi and daily aspirin since September, 2020 with no phlebotomy needed - I researched and decided to start with low and slow dosing. The highest dose was 15mg 2x daily. I actually got down to 5mg 2x daily but that dosing did not maintain my symptoms consistently. Currently on 10mg 2x daily.

I have a great doctor who listens and discusses my questions. We work together on dosing and he knows I sometimes drop my dosing to 10 mg morning and 5mg nightly. I find lowering at night helps with quality of sleep and feeling better when I get up.