Long haul flights

[Daisyfield]

Hello all, I've a long haul flight booked for a holiday (booked about 6 months ago pre-PMR!) I've read on this forum that others do long haul no problem...but are there any nuggets of advice? I'm on 10mg and do feel very achy in upper legs and can get v tired without much warning. I've paid a bit extra for leg room by exit (can't stretch to more than cattle class) But I'm a bit worried about fatigue...also...has any one had problems on antimalarials with pred? I'll be 7 hours ahead.

[Yellowbluebell]

Lots of forum members have done long haul flights with pmr and GCA. As its so late most people are asleep but they will be about in the morning to give you advice.YBB

[GOOD_GRIEF]

Leflunomide and pred are often prescribed together, but not so much for PMR. The combo is often used for RA.

I'd ask your pharmacist about whatever combo you've been prescribed.

[PMRpro Ambassador in reply to GOOD_GRIEF]

Leflunomide isn't an antimalarial.

[Bennifred]

Hello! I have just returned to the UK from New Zealand (33 hours door to door). My top tip is to request wheelchair assistance at the airports (tell whoever you booked your flights with that you require wheelchair assistance). That will save you a lot of energy - no standing in queues or walking miles through terminals.

The other thing is: drink lots of bottled water to stay hydrated. Avoid tea and coffee on the aeroplane because it's made with water from tanks which aren't always adequately clean and then not boiled.

Most importantly: have fun!

[Daisyfield in reply to Bennifred]

Thank you...yes, I think lots of water will be key...easy to forget. Re wheelchair...the thing is I'm mobile, but if PMR kicks in I just can't go anywhere fast at all...and because it's an invisible disease its hard for others to know...I'm considering taking sticks/crutches, but I might be fine and not need them. I'm travelling w family so they can help carry stuff.

[Bennifred in reply to Daisyfield]

You can still use wheelchair assistance even if you are normally mobile - it's an energy saving thing! Save your energy for more important things - like enjoying yourself! Travelling is very tiring, you might as well minimise that if you can.

[Daisyfield in reply to Bennifred]

Yes...thank you...and I think probably part of the problem is me, adjusting to this illness, thinking I should be able to do what I did before. I feel a fraud asking for assistance. But I'll certainly try to accept you advice and most importantly as you say, have fun!

[PMRpro Ambassador in reply to Daisyfield]

I'm perfectly mobile but I can't stand in queues or hurry. I always book airport assistance. You aren't a fraud.

It depends on the airport - some will use the electric buggies but it depends where they have to take you and they don't fit in smaller lifts - because with airport assistance you get to use short cuts and lifts instead of escalators.

[Daisyfield in reply to PMRpro]

yes...exactly this...standing for ages in a queue. I've just got to get my head around not feeling a fraud...because I'm not one. and also thinking of carrying a stick a proof I might need assistance...is that weird?

[PMRpro Ambassador in reply to Daisyfield]

I don't one more thing to carry! They take you through the crew lanes as well - where the immigration staff are rather more kindly!

[CT-5012 in reply to Daisyfield]

If you are embarrassed then LIMP lots of us do! Have fun! 😁

[Toenti in reply to Daisyfield]

Hi Daisyfield, I have had PMR for four years now. Do quite frequently have to fly long distance. I always ask for wheelchair assistance and nobody ever asks why. I also take extra pred. For about a week to counteract the inevitable fatigue . Good luck and I hope that you will have a great holiday.

[SnazzyD]

Buy some flight socks (the right size) as anyone should, but don’t sit like a sack of potatoes. Pump your calf, thigh and buttock muscles at least hourly to avoid circulation stasis. You can also get plane noise cancelling earplugs if you are one of those who find the constant high pitched whoosing noise wearing. If you’ve got short legs like me, it can be worth having a bag that can also double as a footstool so the backs of your legs aren’t always being pressed down by hanging legs.

I don’t know where you’re going. What antimalarials are you taking? I always used to recommend people try them before flying in case they don’t react well and may need an alternative because upset gut can lead to poor absorption of Pred. For this reason, personally, I eat defensively eg hot food only or out of a packet, no ice, avoiding fresh food not prepared in front of me etc. Take great care to avoid insect bites.

[Daisyfield]

Taking Malarone...its a very low risk area...so I've been undecided about it...nurse at GPs says it's optional really. Yes...I must remind myself to move about...my legs are long so I have the opposite problem and feel squashed. It's the tiredness I'm a bit worried about as I can't sleep on planes very well.

[Highlandtiger in reply to Daisyfield]

The NHS Scotland website Fit for Travel is a fantastic resource and you'll find what anti-malarials are best suited for where you're going and then you can check them for reactions with your other meds. And remember there are (much cheaper and perfectly good) generic versions of malarone if you eventually decide on that. Enjoy the trip wherever it is!

fitfortravel.nhs.uk/advice/...

[whitefishbay]

I have been on 9 or 11 hour flights with PMR and no problem. Keep up the dose of pred. Not the time to reduce. Drink lots of water (yes you will have to get up alot and pee but that is good to move around). Never took pred with antimalarials. Make sure you eat when you take your tablets (although I always think eating helps. everything.) Bon voyage.

[DorsetLady PMRGCAuk volunteer]

Hi,

Request Special Assistance - you may feel mobile, but travelling is always stressful. And it gets you through the booking in procedure et al much quicker.

Carry all medication in original boxes in hand luggage plus copy of prescriptions show immigration. Take a few extra Pred in case you need them on holiday.

Take usual medication on day of travel, but maybe supplement with extra (half dose) if you feel you are flagging.

As others have said drink plenty of water.

Compression socks a must, and try and walk about every hour.

Realise you will be fatigued day of arrival/day after depending on timings -

so have a restful day.

Build in “quiet times” every day - if only an hour - completely relaxing.

I always use nasal spray before getting on aircraft.

Plan ahead, and think about time differences for your tablets - I always set my watch on time of arrival city as soon as I get on board and work out if I need to take extra tablets during the journey to ensure my routine of times is retained at new destination (for me 8am). Depending on whether you are travelling east or west there may be more than 24hours between those timings.

Most importantly - enjoy yourself!

[Daisyfield in reply to DorsetLady]

Thank you...and I hadn't thought to take a copy of my prescription...have asked GP to print out......I always wear compression socks as I always get fat ankles flying and on coach journeys! I have lots of extra tablets in case needed.

Also..a bit of GCA advice please...I have never had headaches, vision disturbances, but very occasionally I do get a very slightly tender scalp (as if i had a pony tail tied too tight) and a weird eyeball ache. Is GCA always preceded by headaches?

[PMRpro Ambassador in reply to Daisyfield]

No - only about 40% of GCA patients present with headache though a higher percentage do have it at some point.

[Daisyfield in reply to PMRpro]

ok...thanks. I have lots of pred should an emergency arise as I can't get to a doc straight away...just as a back up.

[DorsetLady PMRGCAuk volunteer in reply to Daisyfield]

Not always, but if in doubt, get it check as soon as you can. Once you have PMR, the assumption is any head problem is GCA, very often it’s not, but sometimes it is!

[PMRpro Ambassador]

Check about the antimalarials as I think there are some you shouldn't mix with pred.

But if you look at the related posts (top right corner of this page on my computer) I think you will find several with the advice for long haul flights that have been running recently.

[Daisyfield]

thanks..yes there seems to be some good info there.