Flying risk with ET

[DoubleF79]

Hi everyone. Has anyone been advised not to fly with platelets up the 1500 mark? I’ll ask doc ASAP but was just wondering. Thank you x

[ggrana]

I was told not to fly, I have same platelets (1.4 million)

[wendycu]

I was told not to fly anything over an hour with ET.

But I was told not to fly because I had a blood clot in my brain 2005, before I got diagnosed with ET.

(Plus check how much your insurance will be before you book a holiday.)

[ritaandscooter1]

Hi, I think it depends on your risk factors. I had platelets that hovered in that same range for 15 years and flew everywhere but got an aisle seat so I could frequently get up. I was considered low risk for strokes and clotting disorders until I turned 60. Kerry

[PhilReade]

I got a DVT on arrival back from Tenerife in 2017 in my right calf

[DoubleF79 in reply to PhilReade]

Gosh I bet that was scary 😦

[JOG1976]

Mine have been in the 1300’s for almost 2 years now and I work in travel and used to fly frequently. I was told that as long as I stayed hydrated and wore the socks and moved regularly that I would be fine but I suppose everyone is different and depends on your situation and if you have any other health issues/ concerns. I am CALR positive and there is new evidence that suggest we are less likely to clot with this mutation and more likely to bleed. What mutation do you have?

Definitely discuss with your haematologist and see what they say. Hope you get the answers you need.

Jayne x

[DoubleF79 in reply to JOG1976]

Thank you. I’m CAL-R too. Started HU on Friday along with my usual 180mg of Peg so hoping the combination brings my stubborn platelets down. Got 2 long haul flights booked for the end of the year (🤞🏻🤞🏻) Got flight socks from a trip we did in Nov 2019 just after I was diagnosed x

[JOG1976 in reply to DoubleF79]

Ask about the new CALR research when you speak to your haematologist and just avoid alcohol in the flight and stay hydrated and move lots. I’m sure it will be okay. Good luck 😘

[abuf]

My platelets have been around 1 mil mark for several years, I've been instructed by my haematologist to get an anticoagulant injection (Clexane) right before any flight longer than 3 hours (or drive longer than this). And of course, to always stay well hydrated.

[Gaithersburg]

I have never been advised not to fly or do long car drives. I do double up my aspirin, when I travel, and try to move around as much as possible though. I have ET and take Anagrelide and Aspirin.

[Wilbert2018]

I’ve never been advised not to fly with ET (jak 2 positive). And my haematologist has actually signed me ok to fly for work many times over the last few years since diagnosis. My platelet counts were very, very well controlled at that stage though as I’ve always been on medication to lower platelets and on anticoagulants because of high risk status (relatively young, but previous thrombosis events).

The precautions everyone has mentioned were also reinforced by my occupational health dr every time I was due to fly eg stay hydrated, ensure to move around (I always choose aisle seats) etc. I’ve never had a problem and done long and short haul flights regularly since diagnosis. But I’ve always been very careful on the flights and really have made an effort to stay hydrated (no alcohol!) planned and kept to a strict regime for moving around etc.

[Bears23]

Yes, I fly frequently. I was advised to try and get an aisle seat and stand or walk to the restroom every 2 hours, if possible. Could also wear compressions socks if you wanted. I took a lovenax injection prior to long flights (like 4-5 hours or longer). Best of luck, hope you can enjoy your trip.

[DoubleF79 in reply to Bears23]

Thank you for the reply. I’ll ask doc at next phone appointment 👍🏻 I’m a total fidget so I’m up & down every 5 mins on a flight lol x

[Bears23 in reply to DoubleF79]

best of luck

[Kari1961]

I haven't got ET, but I do have PV - my platelets are currently only at 162 (I'm being treated with Hydroxy) I had a stroke back in 2012 before I was diagnosed with PV. And agree with wendycu check your travel insurance. I haven't been abroad or flown since 2012. It's just not worth taking the risk, and travel insurance to fly anywhere is usually quadruple the cost and more of the flight.

[DoubleF79 in reply to Kari1961]

Good point with the insurance thank you 😊

[AndyT]

I flew a lot with platelets up to about 1100 - no special precautions (except moving about and keeping hydrated) up to about 2 hours, compression socks over that and low molecular weight heparin for anything over 4/5 hours.

Never had any problems 🤞