air travel safety with an MPN

[Ovidess]

Could anyone weigh in on the safety of traveling by air, or in the mountains, for people with MPNs at risk of clotting? (I have PV, temporarily untreated aside from aspirin and supplements for inflammation, etc.)

[hunter5582]

Suggest you consult with your MPN Specialist for case specific recommendations.

Thrombosis is the main risk when flying with PV. Some find it helpful to wear compression socks to reduce risk. I make it a point to get up and move at least every hour when flying. I have never had a problem in many years of flying with a MPN.

It is worth noting that if you spend an extended length of time in the mountains (at higher elevation) it will increase erythropoiesis. This is a normal function of the body at altitudes with decreased oxygen levels.

Happy travels.

[Solyesh]

I have taken long haul flights every month for work for years (usually 10-16 hours). My MPN specialist suggests that I take an additional aspirin on the days of the long flights and get up and walk during the flight. This suggestion might only be specific to my personal case and of course you'll need to check with your doctor/specialist but in general have had no problems over the years.

[Pachena]

the so what my doctor advised me to get when we fly - it pumps the blood around to avoid DVT’s -

estore-au.getzhealthcare.co...

[JPP2]

Hi, I was diagnosed with PV last September and took a 7 hour flight to Abu Dhabi at Christmas. Haematologist recommended flight socks and moving about as much as possible, worth mentioning that I had an venesection a couple of days prior to flying and also take low dose Asprin everyday. I searched YouTube for information for exercise whilst in flight which was very useful and thankfully had no issues. I would consult with your MPN Specialist as we are all different. Hope this helps and good luck.

[Trueblue8]

I've recently flown long haul to Africa, climbed Mt Kilimanjaro, which stands at just under 20000 feet, then flown home to the UK without any problems.I had an appointment with my MPN specialist prior to going just to check it was OK to go and I would strongly recommend you do the same. The only advice you should take is from your own specialist as we are all different.

All the best

[Ovidess]

Thanks to all. The truth is I don't really trust my hema/onc's judgment. I'm here at the court of MPN patient opinion/experience for that reason. He's extremely wary of everything a bit out of his scope. He's distrusts my choices, which I research to the hilt, and would prefer I follow his narrow road. This is sensible for a doctor, but really I need someone more experienced and am thinking how I could ask for a change at my clinic, which has made some choices that have caused big Medicare coverage problems. To mix metaphors: I wish the dust would settle on that insurance biz so I felt free to make other waves. (I also have a Mayo video visit coming up. I am not in a large city where choices abound.) To tell the truth, given where my platelets and HCT are at and where they WERE at, I think my local doc is telling me that plane trips may be dangerous to persuade me into his HU camp. He's a nice man, just not on my wavelength. I may be forced into his camp, but not without seeing all choices clearly. (My interferon treatment is (permanently?) on hold due to liver enzymes' protests.)

[hunter5582 in reply to Ovidess]

We all need a MPN care team that we can trust. MPNs are rare disorders and many docs, including hematologists, have little experience with them. It is a very good thing that you have an upcoming visit at Mayo, presumably with a MPN Specialist. Perhaps you will get some good feedback there.

Not sure what is going on with the liver function tests. If it was a reaction to IFN, note that elevation in LFTs alone is not considered a reason to discontinue Beremi until the LFTs are > 5x Upper Limit of Normal. accessdata.fda.gov/drugsatf... My LFTs reached 3x ULN and we made no change to my Besremi dose. My Integrative Medicine doc recommended a Milk thistle Extract (Silymarin) . My LFTs have returned to normal. I can't prove the Silymarin did the job but am certainly going to keep taking it while on Besremi.

In the short-term, you could treat the PV with therapeutic phlebotomy to reach the HCT target. This is standard PV care. As you may have seen from our recent conversation that phlebotomy-induced iron deficiency also come with a risk of potential adverse effects, but so do all of our treatment choices. Allowing your HCT to creep too high definitely comes with significant risks. It is all a matter of weighing your choices and making the best decision for yourself that you can.

Regarding waves, make them! Sometimes waves really do need to be made. More importantly, if you feel the care you are receiving is not the care you need, do whatever is necessary to optimize your care team. It is your right as a patient to seek optimal MPN care. It is also a responsibility as a patient to not just accept lower quality care if that is what is happening. Healthcare systems do not change when patients just accept how thigs are.

Wishing you all the best.

[ainslie]

before flying make sure your Hct is well controlled, take usual aspirin dose, don’t increase dose unless Haem approves, Dr V told me more isn’t necessarily better. Get up and walk around plane often, eg every 1hr , 2 hrs max even if sleeping set alarm.

Make sure you are well hydrated the days before and during flight and when at high altitude, you can Google how much water you should drink when flying, too much water depletes sodium which can lower blood pressure etc. Avoid alcohol day before and during flying, limit coffee. And of course check with doc. Compression socks are probably a good idea. Do all that and enjoy the trip.

[IsabelleHo]

For air travel, my hemo advised me to walk the length of the plane and move my legs up and down every hour on a long-haul flight. I have ET and take aspirin daily, so that might not apply to you. Check with your doctor to see what specific measures would work for you.