I’ve never experienced a long haul flight and, as we prefer to drive when we holiday abroad, I haven’t been on a plane for 15 years but I am booked to go to S Korea next week to visit my granddaughter who is currently teaching in Seoul. In August I was diagnosed with Large Vessel Vasculitis and the consultant has said there is no problem with me still going. I have today reduced to 30mg of Pred and currently feel super fit with lots of energy for walking and doing touristy things and haven’t been feeling any symptoms of GCA/TA. I would take all the usual precautions of drinking plenty of water, regularly getting up and moving around and wearing compression socks but don’t know how I would normally get affected by going on such a long flight even without the complication of Vasculitis and steroids. Any comment from your experiences would be gratefully received. Also advice on adjusting when I should best take my breakfast dose of pills both during the flights and after arriving in and back from S Korea which has a time difference 8 hours ahead of the UK.
Does anyone have experience of how Large Ves... - Vasculitis UK
Does anyone have experience of how Large Vessel Vasculitis (GCA /TA) may be affected by a long haul flight?
I flew to NZ with GCA, albeit further along and at a lot lower dose that you with no issues.. and many others in the PMRGCAuk forum have as well. Just make sure travel insurance company are aware [sure you have done that] - made no difference to costs for me.
As for meds etc see this - posted on PMRGCAuk forum, but you should be able to read okay -
healthunlocked.com/pmrgcauk....
Enjoy…
Many thanks I'll try the link. We have annual travel insurance through our bank and fortunately no hassle as they said I'm fully covered as booked before diagnosis.
The link is on the dedicated PMRGCAuk forum where you will meet many more others with GCA than here.
I have travelled all over the world on pred though not at quite as high a dose as you. You may feel super-fit but that is the pred talking and you may not be quite as fit as you think! I always book airport assistance because you never know what might turn up - at Seoul for example the check-in desk insisted it was only a very short distance through security and to the gate and it was indeed. With no people around it was less than 50m to security and 100m to the gate the other side, depending on how many shops you looked at. But despite the priority card offering a supposedly faster queue, I stood in that queue, surrounded by families with screaming children and crew pushing past to get to their flights, for over 45 mins. The other queue wasn't any better though. And when I got to the gate when we were called, there wasn't a seat to be seen. Then I played the priority card at the desk and we were taken to a different area on the next floor - seats and quiet! Without that airport assistance card I'd have been exhausted before even getting on the plane. In Munich, a not very large airport, we docked at the extreme left of the terminal, baggage reclaim was at the extreme right, couldn't have been further apart, And there were stairs and long corridors. Without airport assistance, I'd really have struggled. If nothing else. they sort out gate changes for you and you arrive at your destination feeling more human than without.
That’s really good advice. I do realise it’s the meds that are making me feel hyper but as I’m so mobile I would never have thought of booking airport assistance. I’ll look into it thanks
Essential in my view..and long haul departure gates are always the furthest away …😳
Hi Onscureclouds. I have GPA but flew long haul while on 40mg Pred and 1 month after Rituximab, I flew to Rio de Janiero and 6 months later while on 30mg of pred flew to Johannesburg. Admittedly we had the flat beds so was able to get some proper rest and I did, each flight slept for 6 hours (a few VATs helped) no worries. Nick.
Really helpful feedback so thanks to you all for getting back to me. It was so quick and easy to book Airport Assistance and I’m sure it will prove to be the right thing to have done in case of long walks and queuing. Also takes away the stress of trying to find where I have to go for connecting flight
I have used Airport Assistance for some years now and find it a wonderful, free service. The biggest bonus is that I can start my holiday as soon as I arrive at my destination instead of having to rest for a day or two. Having to accept that I need a wheelchair was difficult at first but the benefits soon helped me to move on from that.
Best wishes, Budapest
I spoke to someone today who has regularly used Airport Assistance travelling to Arizona. Whilst America does have a different culture she said there has been increasing pressure regarding tipping. When her husband recently gave the person assisting a $20 note he said he was expecting more as it was a long way and became quite rude offering to take any currency if they didn’t have any more dollars. Tipping appears to be frowned upon in Korea but I’m guessing this service is similar to porter assistance and it would be appropriate to tip in Amsterdam & UK - a personal choice I know but I won’t have any euros so just wondering if any of you have had any issues with this
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