I have to travel from the UK to New Zealand to visit my brother who has a terminal illness. I am travelling in a short time frame, just a week to go out and return.I am currently on 0.75mg of pred and tapering to 0.50mg.
Is it advisable to stop the taper while travelling or even to increase it. ?
I know that long haul travel is stressful, can that trigger a flare?
Thanks for any comments
I'm so sorry to hear the reason for your trip - but is there no way you can take a bit longer? That is a punishing schedule - I'm coming to the UK over the space of a week and it feels hectic even without the drastic time change which is the hardest bit really.
I would definitely not taper any further while away and would probably go up a bit because it is going to be very stressful. Make sure you take plenty of pred with you just in case. It COULD trigger a flare - but so could the fact your brother is terminally ill. Don't underestimate the effect that can have.
Thanks PMRpro.It is so close to Christmas that it is difficult to stay longer. I will take extra pred with me, just in case.
I'm not looking forward to the trip at all but better to see my brother than go to his funeral, I cannot do both.
Thanks.
Definitely - but it is a one-off so Christmas pales into insignificance in comparison. Be careful - rest as much as you can/
Sending you strength and love. 🙏💖
Glad you are coming over…Scotland, I assume? Are you driving in your campervan for an amazing experience? However you travel, hope you have a great vacation! S x
No - flying for the first time ever, to the UK that is! Time constraints and weather - and I won't do it again, don't like not having my own wheels!
Wondered how you’re getting on! It’s weird not having your own wheels, I guess! Weather…due for snow Thursday & Friday here in south of England, but assume you are visiting Scotland! Enjoy it, you can always get taxis (mistyped & it said tacos!) or Uber around…! Take care, please, S xx
No, started in Innsbruck, Manchester, Sheffield, Whitby, Edinburgh, back to Whitby. Flying out Wednesday - and snow into the high valleys at home on Thursday!
Advice please. How do I contact/email Fran Benson please 😊
Go to her profile and send her a message -probably easiest - but be aware she doesn’t work full time.
healthunlocked.com/user/Fra...
Thank you 😊
Sorry to hear about your brother -and no reduction in Pred, in fact maybe take an extra mg or two for the period you are away. The stress of the situation is as likely to cause a flare as much as the journey itself. To make that as easy as possible request assistance at airports -through t travel agent, airlines or airports.. it really does make a difference.
..on the actual trip, add in an extra dose when you’re at the halfway transfer airport…
Having a wheelchair in the airport makes a huge difference on fatigue, legs, speeding w chair through security, getting to gate. Even tho one can look able-bodied, inside not.
I know I used SA when I had GCA - but I also have bad back… so when I go to NZ again to see daughter my have to use again…
Did you mean this for me or paintpots ? No matter he’ll see it anyway.
I think that yes it might be an idea to increase my dose from 0.75mg to 1mg for 10 days.Thankyou
Good idea, but you may need slightly more - and don't be afraid to, if it's only for 10 days there is no problem in dropping back down again afterwards. There's only an issue if you are on higher dose for more than14 days.
Hope it goes as well as it can. 🌸
Thanks for your comments, it has helped me to decide what to do.
Have replied further down….
I hope that the journey is not too hard for you. We have recently returned from a 3 week trip to Sydney and it took us a while to get over it.
I am sure you will be very emotional seeing your brother and hope that your illness does not flare. Are you travelling on your own?
Best wishes to you.
Iam travelling with my wife, I wanted to go alone but she would have none of that. We can support each other. I'm sure will be OK if we take precautions and are safety conscious.
I am so glad you will be able to support each other. It is a long way to travel on your own. I would hope you will be able to rest and sleep on the flights.
Can understand your wife wanting to go with you. I have done the trip twice on my own - with and without GCA…but not with the worries you have. So please take all the help/assistance on offer as I said previously….
I agree with the advice you’ve had . I am so sorry for the situation you face. I am sure that you have made the right decision. I fly to Australia in two weeks. We are going business class in spite of the eye watering expense, it really takes the strain. I always take extra Pred with me, just incase. My guess is that you will feel it most when you return home. Take great care of yourself. X
I did look at business class but cannot afford it, we have premium economy on the longer legs, which we hope will allow us to sleep somewhat. I do think the jet lag will be worse on the return back to England. It will be alright and thanks to everyone who has given me advice and kind words. xx
We can’t really. The kid’s inheritance is taking a hit. I don’t think I could manage standard with the current state of my disease. I have airport assistance too. I hate all that but all my grandchildren are out there and my 2 daughters First Christmas all together in years. Premium economy makes an important difference. I wish you a gentle time. You could ask for an upgrade in the circumstances. I got one for less once. It is worth asking.
Definitely request assisted boarding if you haven’t already . They’ll take care of your luggage and transport you about in a wheelchair . I’ve travelled twice on my own and twice with a friend and it’s an absolute game changer . Your wife won’t need to struggle to help you at all. We’re hoping to go to Oz for our son’s wedding in March and I wouldn’t be able to travel without it .
Good luck !
Premium economy is definitely worth the extra. Highly recommend that you book Airport Assistance as no queuing for security, whizzed round the back routes and through passport control in a jiffy. And your wife can accompany you too so she'll benefit. Cannot stress the difference it makes and you won't get on the plane worn out before you start 👍
Strength, Love and Prayers to you. I think you have made the right decision to go to see him now rather than to his funeral🙏
My partner lives abroad, long haul, I always request airport assistance... dont know about other airlines but with BA its only a phonecall away and makes a huge difference to exhaustion through the airport, almost like being a VIP. Sending positive thoughts.
I so hope it all goes the best it can. Xx
Everybody is different of course but I travel long haul regularly (every two months on average, 12 hour flight then return in two weeks) and do not adjust steroid intake and have no side effects other than what you normally get with long haul.
Having just come back from 3 weeks in Bolivia, the biggest challenge for me was sitting still in a restricted space for such a long time. I flew from LGW to Santa Cruz, via Madrid, which made it a very long day, but not as long as your journey. I didn't flare, but it took me 2 or 3 days to recover from the stiffness from the flight. I increased from 5mg to 6 mg a few days before I flew out and that did make me more comfortable. I slept most of the way on the intercontinental flight, but I asked for an aisle seat, so that I could get up to stretch my legs easily. Luckily I didn't have a time change to contend with as we were getting up and going to bed so early, so I was essentially keeping UK time anyway, while I was there.
We did the same trip in 2015. My husband was on a low dose of preds. He explained to his dr at the time and he increased his dosage and gave him more than a months supply to last. It made such a difference to him. He managed the punishing journey. I however find the jet lag awful. Took me a week to recover. I would advise anyone over 60 to consider a stop over in Dubai.
He has remained on 3 mg ever since as we never get to see a dr anymore. They’ve forgotten he even exists such as things are now.
So my advice is speak with your GP and plead your case.
Hope all is ok for your brother and you manage the journey.
Thanks everyone for your advice. I will try airport assistance for my wife in Dubai, I think the terminal is big there.I have enough pred to be able to up my dose . We should be OK. x
Not sure where you are flying from - but if it’s LHR-that’s always a long walk, so SA needed there!
The terminal is huge in Dubai. Please book assistance for the whole journey. Heathrow requires a lot of walking too. I know to my cost about not accepting assistance the first time I flew after GCA, and that was a small midlands airport for a short European flight. Ease the stress for yourselves.
So sorry to read your news. How tough for you and your brother but so great that you will see him soon. I wish you fund moments together.
you might want to be aware of the sinus areas in such a long flight, the air in planes is very dry and symptoms somewhat similar to GCA can develop, hydrate hydrate and you have an aisle seat so the up and down will also be good for recommended leg movement to diminish potential for dvt like symptoms, if not up and about at least raise your heels every hour for a few minutes while toes are on the floor, and limit caffeine intake, maybe chamomile instead of earl grey. condolences for your brother, my only one passed last year and i was fortunate to be around him as he declined rather quickly. as others above have said, rest often and keep your mind in as positive a space as you can.
I'm so sorry to hear The Reason for your trip. And that you have a strange. I did some traveling this summer while tapering and did not alter my schedule. It worked. I pray it works for you.💕
Traveling should always be associated with vacation, relaxation, and pleasant experiences. It’s unfortunate that your trip to the UK, a place I've always dreamed of visiting, has a different purpose. I hope your brother will be okay or at least stable. Have you decided where you’ll stay and how you’ll get around the city? I haven't been to the UK, but I recently went to Rome. Do you think the prices are similar? I found things reasonably priced except for taxis. Luckily, someone recommended atob atobtransfer.com/italy/rome... , so I got to my hotel from the airport without any issues or excessive costs. I'm sure atob operates in the UK too. You can check on their website.
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