Ruxolitinib : Hi Crew, So I’ve been taking... - MPN Voice

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Ruxolitinib

StreetPastor profile image
12 Replies

Hi Crew,

So I’ve been taking Ruxolitinib for a while as I have MF. I’ve just been told I have very hight cholesterol and am pre-diabetic. None of this in the family. Google states cholesterol could be from Ruxolitinib. Any wisdom or advice please?

Also I’m due to fly on 9/11/24. Don’t scare me but wisdom appreciated 😃

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StreetPastor
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12 Replies
DottyDaisy profile image
DottyDaisy

Hello Street Pastor. This is unfortunate timing for you, with only a week's warning before your flight. Sorry that you've suddenly had this information thrust upon you.You don't tell us whether or not it's long haul, nor whether or not you think there is room for adjustment in terms of your nutrition or how active you are. Also do you already have concerns for your heart health?

I would also ask yourself if you actually feel healthy overall.

I ask because both high cholesterol and "pre-diabetes" are conditions which do tend to encourage some doctors to reach for their prescription pads a little too readily.

I think it's important you discuss these results with your MFN haemo, to decide, before the trip, what to do about your MF medication.

If you go, you can still make sure you drink plenty of water, take fresh, organic produce to snack on and get an isle seat to make it easier to get up and about as frequently as you can. Some people still advise compression stocking but I have heard they are not as popular astgey were.

I am sure this group will provide you with many more angles to consider and that you will then make a wise decision on the way forward.

In Love and Light from Daisy

❤️🧡💛💚💙💜🤍

StreetPastor profile image
StreetPastor in reply toDottyDaisy

Thank you 🤩

hunter5582 profile image
hunter5582

You are correct that RUX can cause hypercholesterolemia. This, along with the alteration in blood sugar levels is something to review with a MPN Specialist.

I have floated in and out f the prediabetes range for years, but is has increased in the last year. It might be related to the Besremi or could just be aging and needing to lose 25 pounds. Regardless, it has had no impact on my ability to fly. I just be sure to stay hydrated and get up and move every hour. I have done flights over the Atlantic with no problem. Some on the forum will take an extra aspirin and/or wear compression socks.

Suggest you consult with your MPN care team for the best advice. I expect they will tell you flying is fine with reasonable precautions. Best to get expert advice on this one though.

StreetPastor profile image
StreetPastor in reply tohunter5582

Thank you, this is very helpful x

Ebot profile image
Ebot

Hi. Yes, high cholesterol is a risk with Rux. Statins are the usual response.

I’m in this situation myself. Not keen to start statins. I’ve been told lifestyle changes are unlikely to make a difference in this case (I eat reasonably well and am reasonably active).

Anyhow, haem will pass this on to my GP as they have more experience in this area so doubt I’ll hear any more, any time soon!

Definitely have a chat with your haem team about your concerns. Am sure they will offer reassurance and advice.

StreetPastor profile image
StreetPastor in reply toEbot

Thank you 😃

Channick profile image
Channick

Ive developed high cholesterol too. My haematologist told me it is from the ruxo. I’m pretty healthy and mid 40’s so wasn’t expecting. I’ve been on low dose cholesterol meds and it’s brought it down.

All the best with your flights

StreetPastor profile image
StreetPastor in reply toChannick

Thank you x

ainslie profile image
ainslie

you havnt quoted any numbers so trickier to comment , what is essential is to check with your Haem first, if he/she okays it then follow the usual for us MPN people flying eg plenty hydration day before,during and after flight, get up and walk around every 1.5 hours , no alcohol day before, during and day after, easy on the coffee, probably compression socks.

If you do all the above especially the first one ie ask Haem, you should be able to relax better, hope that helps

StreetPastor profile image
StreetPastor in reply toainslie

Thank you. My cholesterol is 8.1 Thats all I know at the moment

Chicagopv profile image
Chicagopv

my cholesterol was high and I thought it was genetic, because I eat very little fat and no meat. I didn’t think about the Jakafi. I’m near pre-diabetes, too, and again, didn’t blame Jakafi. I’m on statins and feel fine. When I fly I wear compression socks. Next time I see my dr, I’ll mention the rux. I’m 68, lost 25 pounds in the last couple of years, walk 4-5 miles a day. Fly and don’t worry.

StreetPastor profile image
StreetPastor

Thank you

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