vitamin K: I have PV. I take Ruxolitinib and feel... - MPN Voice

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vitamin K

Bows12 profile image
16 Replies

I have PV. I take Ruxolitinib and feel very well now. I do sometimes get night time leg cramps though and have heard that vitamin K may help with them.

Does anyone know whether it is ok to take this supplement?

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Bows12 profile image
Bows12
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16 Replies
hunter5582 profile image
hunter5582

When I had the night leg cramps the issue was a magnesium deficiency. A Mg supplement resolved the problem. I have not heard of Vit K helping with leg cramps. Vit K may be OK with PV but can interfere with some anticoagulants. Suggest you speak to your MPN Specialist about this. Note that I consult with an Integrative medicine doctor about the use of complementary health interventions and supplements.,

bordeauxgirl profile image
bordeauxgirl in reply tohunter5582

Good Morning all, I have PV along with quite a few other problems, but the night leg cramps were really bad for quite a few years, Try this or that , nothing worked except jumping out of bed like an 'Exocet missile' to try and stretch it out. At 80 years old it is a little bit out of my fast 'jump out of bed exercise regime, truly, a sight to see and hear.

Until we had a new bright young 'ozzy' doc who advised me to take quinine tabs before I go to bed, other docs recommended drinking a little quinine water, I thought adding a splash of gin might also help with the sleeping, (didn't help).

Just my imagination, so they said. But I collected the tabs from my chemist and can honestly say I haven't had any cramps since starting them 3 years ago. Touching wood as we speak. I had these cramps for 14 years, since diagnosed with the PV. Might work for some, might not , but I always think have a go'. It's just one more tablet at night.

Bows12 profile image
Bows12 in reply tobordeauxgirl

How interesting! I’ll look into that!

RoundTheWorld profile image
RoundTheWorld in reply toBows12

My Dad (doesn’t have an mpn but does have cardiac issues and meds for them) was told to try tonic water re. Leg cramps and it certainly seems to help him. Check with your Haemo though as a quick Google search suggested quinine not safe for all.

nellietheelephamt profile image
nellietheelephamt in reply tobordeauxgirl

My husband and brother in law swear by tonic water for cramp.

Spanelmad profile image
Spanelmad

I was told to.avoid vit K with my bloodthinner

Jomalile profile image
Jomalile

I rather think that Magnesium is a suggestion. It helps me well. My haematologist totally agreed with this. You can ask yours…

Bows12 profile image
Bows12 in reply toJomalile

Thank you everyone. Of course, I have already discussed my leg cramps with my hospital and GP service and have had blood tests which show my magnesium levels are ok. We all agreed that a magnesium supplement would do no harm so I do now take it and use a very helpful spray from Harrogate Organics before bed. I think they have helped.

The source of the Vitamin K information is from JAMA publication in October this year, which is a peer reviewed journal and I wondered whether anyone had come across siimilar studies because I thought I remembered that Vitamin K was not good for MPN patients. Thank you again for the replies. Very helpful.

Avoid Vitamin K with warfarin. Vitamin K is present in quite a few foods but especially green leafy vegetables. My INR target is 2.5 ( range 2.0 - 3.0) and is stable but if I eat a large green mixed leaf salad I drop below range very quickly and stay down for around 24 hours. Useful if I need a biopsy and don't get enough notice to change to heparin but not recommended as it is uncontrolled.

Kale, water cress and spinach have the biggest impact for me.

ainslie profile image
ainslie

I have PV and have taken K2 for 14 years and Rux 7 years , all okd with my expert. I take Asprin but no blood thinner, if on blood thinner definitely check with doc/haem.

Magnesium tends to be the cramp culprit, your magnesium levels may be okay but are the optimal, the red cell magnesium test is best. You can experiment by gently increasing oral magnesium to see and experiment with magnesium spray on the muscle. As always check with doc/haem of course.

Carol0925 profile image
Carol0925

Hi, I’ve taking Magnesium Glycinate for years which really helps my muscle aches and cramps. You could try a magnesium spray too. Impo avoid Vit K.

Cookiewoman profile image
Cookiewoman

Hi, several years ago I started to get leg cramps at night. I checked with Dr Google and saw that Magnesium was being touted to provide some relief. I started with the Magnesium and the cramping subsided. Both my primary doctor and hematologist/oncologist have been made aware. Always better to check!

IrishSetterLover profile image
IrishSetterLover

Try drinking some tonic water before bed. The quinine helps with the leg cramps. 😃

Bows12 profile image
Bows12 in reply toIrishSetterLover

Quinine seems to be a popular choice! Thank you!

IrishSetterLover profile image
IrishSetterLover

You're welcome 😊 My doctor actually told me about it. Hope you feel better soon. 😊

Myself
Bows12 profile image
Bows12 in reply toIrishSetterLover

Thank you!

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