ET/PV and going to high altitude

[Ccsintx]

Newly diagnosed with ET and I live at a low elevation. What do drs advise about going above 8000+ elevation to hike and vacation. My love is in the mountains and don’t want to give that up; however I did not think that was my first question with my doctors. Just wondering you that have had a MPN for years what you have been told.

[Mwalimu]

About 5 years ago I was advised not to spend time at a high altitude in Ethiopia by a hospital haematologist. At one of the forums I was advised by an MPN specialist to limit any time spent at a high altitude to 1 week.

Basically it seemed doing so could trigger a further development in my MPN. Sallie

[Lena70 in reply to Mwalimu]

This is alarming to me. From my blood work you can see my MPN started 7 years ago, but the downhill slide that led to my diagnosis started after spending two weeks hiking and biking at high altitude.

[Ccsintx in reply to Lena70]

Just crazy. Sorry for that

[Lena70 in reply to Ccsintx]

Thanks. I see my hematologist next week and am definitely going to bring this up. I'll let you know what she says.

[Cja1956]

I’ve had an mpn since 2008. I went to Israel in 2018 from the US and experienced nosebleeds on the plane and several times on our tour. It was also in June and extremely hot in parts of Israel, and since I was on Hydrea, it really affected me. But, other than that, it was the trip of a lifetime. I was diagnosed with post Et Mf a year later, and never could have gone now. I am so grateful that I went when I had the chance.

[hunter5582]

Extended time spent at high elevation can cause erythrocytosis (elevation in RBCs). Depending on how your ET presents, that may or may not be an issue. I would not think that a short stay at elevation would be an issue. Best to consult with a MPN specialist on this to be sure. .

[Deefen]

I went to Llasa (Tibet) before I knew I had ET. I did get awful altitude sickness and was out of action for a day with blinding migraines, vomiting etc. I was fixed immediately by our guide getting me some local herbal medication (which I suspect might have included coca leaves!)

I wasn’t the only one in our group that was struck down, 3 out of 8 got it - one way worse than me

[Ebot]

Hi there. I’ve heard conflicting responses by haematologists to this question. I think best to discuss it with your consultant who will be familiar with your particular profile and perhaps be best placed to give advice. They may also have different views as to different locations. (The quality of local back up / medical facilities may be something to take into consideration.) I’ve certainly heard people on this forum reporting successful trips to high altitude destinations. But you may possibly need to take some extra precautions. Do hope you get to continue to do the thing you love.

[Dovme]

Two years ago l went to Bogota Colombia which has an altitude of 2,644 meters 8700 ft and we did hikes upto 10000 ft or 3,150 meters.

I have ET.At the time was not on any meds just aspirin but experienced no altitude side effects. My platelets were higher back then. I agree just check it with your doctor and have a great time

[Innessant]

Nov. 2019 I hiked in Nepal half way up to Everest base camp and above 3500m. I was a 63 year old male then and had PV for several years. Phlebotomy and aspirin only.I was fine apart from the usual tiredness for anyone hiking at those altitudes.Everyone needs to adjust a bit to higher altitudes. Consensus is that altitude sickness hits randomly.Elite climbers can get it and average people like me do not. I would not avoid life because of PV.

[JaK2ET]

Welcome to the forum!

I read a scientific paper online which suggested that, if you have PV and live at a high elevation, it would be a good idea to move nearer to sea level, because there was evidence that a lower elevation would reduce the risk of heart attacks, strokes, etc. However, as far as I can recall, the paper did not say anything about ET, or about the risks of a short stay in the mountains ...

I agree that you should discuss this with your medical advisers.

[Ccsintx]

Thank you all for your personal info and prospectives. I appreciate you all taking the time. Of course I will talk to my dr. But just want to hear your stories. 🤗