Long Haul Travel

[SheffieldSonia]

I am flying from Manchester UK to Phoenix AZ next Monday. Am staying for 70 days near my son and daughter in law. Am traveling with my husband who has moderate dementia. I was diagnosed with PMR early Dec 2017. I started on 15mg of Prednisolone which seemed to offer some relief. Dr wanted me to reduce it to 12.1/2 which I did one week ago. Doesn’t last for 24 hrs before stiffness is back. Any advice re travel and how to recalculate meds with a 7 hour time difference. I have gone from a very busy active 76 year old to a painful scared shadow of my former self.

[Rose54]

No advice

But just wanted to wish you a absolutely fantastic time

And ask if you need a assistant to come with you

[Juliaaf in reply to Rose54]

Or two assistants? Xxx Have a great time and keep wel. Julia.

[Sandy1947]

My body could not stand such a huge decrease in Pred. I don’t think yours can either. Slower tapering should help stiffness but I’m no Dr. Aunties will come along with specifics re. time change and meds.

I love Phoenix. Pain should be better in warm weather. Get lots of help on the flight, stretch and walk the aisles to prevent stiffness. Enjoy!

[Mary63]

I think from all I have read on this forum, you have not allowed yourself long enough on 15mg to clear out all the inflammation. You also may be one of the people who needs to taper by smaller amounts than 2.5 mg. I know you were only doing what you were told. ....The learned ones will be along soon. Good luck, and I hope you can enjoy your time in the US.

[DorsetLady PMRGCAuk volunteer]

Hi Sonia,

If it were me I’d be inclined to go back to 15mg for the time being until you’ve got yourself settled in Phoenix, then try reducing again. It may be more successful.

As for flight, take tablets as usual flying day, and stick to your normal times - say 8am whatever time zone - if necessary take an extra dose, or half a dose if the period between doses will be more than 24hrs, which it will be on your outward journey. Hope that makes sense.

Ask for special assistance at airports, the cabin crew will also be aware so will be a bit more attentive - makes life so much easier, and take your medication, copy of prescription and anything else relevant in your hand luggage. Don’t do too much for a couple of days after flight, but most of all enjoy yourself!

[arcr in reply to DorsetLady]

Great advice

[micheleinnaples]

I, too can not provide advice but I just wanted to offer spiritual support. I am caring for a 92 year old lady who has late stage Dementia. I am only with her about 5 hours a day and when I leave, I am absolutely exhausted. I wish you safe travels and agree that sunshine and a heavy dose of Vitamin D will do wonders! Sending positive thoughts and prayers...

[SheffieldJane]

Hi SheffieldSonia and welcome to the site, I haven’t seen you post before and I must welcome someone else from my part of the world. I hope your journey is uneventful and comfortable. I am currently with my two daughters and their 4 children and partners in Australia which entailed two fights of around 13 hours and a short haul down the Eastern Coast.. I had some trepidation because I haven’t been feeling too great. I was diagnosed with PMR in March 2016 and have reduced from 20 mgs to 7 mgs using a dead slow nearly stop method available on this site. I was sensible in the extreme, drinking only water and eating very lightly - no carbs or heavy food. I had the assistance of a small dose of diazepam to ensure that I slept at the right time. I took my Pred on the morning of travel and approx 12 hours later on the morning in Korea, then in the morning in Sydney. This extra helped me weather the stress of the journey, both physical and mental. I didn’t really experience jet lag and have adjusted to the time difference really quickly. Better than when I was well. I did envy the folk who had requested assistance, it seemed so helpful and got you to the front of queues but hand on heart I don’t think I could justify it these days. My mobility is pretty good.

I really think your reduction is ambitious. I have gone down in tiny stages stopping at the first sign of trouble. Please have a look at some of the posts about slow tapering. Your doctor’s way will cause you unnecessary stress, pain and stiffness. Initially I needed every one of my 20 mgs, the relief was nothing short of a miracle. Have a wonderful time! Plead a rest day whenever you want one. I think I’ve overdone the beach days running after the grandchildren and I’ve cried off tomorrow for a slothful day in my peaceful holiday house, on the veranda watching the bird life.

[PMRpro Ambassador in reply to SheffieldJane]

Been wondering how you are - what with the Sydney heatwave and all!

[SheffieldJane in reply to PMRpro]

Hi PMRPro, I managed a quick read of 200 posts after a couple of days off. I felt like a salmon watching it’s mates rush down the river and pondered how to get back in. You are all beautiful viewed from a distance even.

The sun is not what it was for us, in spite of factor 50 UV protection, I have painfully burned the top of my back that swelled with Pred. I have bought both families a uv protection beach tent and sat outside like a fool while the children built sandcastles in them. There is a blessed breeze on the beach but it’s been 39 degrees and rising. What about your European gales and flu pandemic?

Then the Californian wildfires then mud slides.

Currently lying on the bed under a fan.😎

[PMRpro Ambassador in reply to SheffieldJane]

We didn't get the gales - south side of the Alps - and the worst snow was further west, around Zermatt had over 2 metres in under 2 days! Utterly gorgeous today after rain and slush on Tuesday - driving back from Innsbruck this afternoon it could have been March!!!

[PMRpro Ambassador]

Ask your doctor to allow you to go back to 15mg for the trip and then reduce 1mg at time while you are away IF YOU FEEL UP TO IT. If you don't - don't.

I hope you have requested airport assistance - you can usually do it up to 48 hours before travel so if you haven't yet, do so. It makes such a diffference having someone to share the knowing where to go and pick things up plus you get priority boarding instead of being part of the rugby scrum. Unlike SheffieldJane I have no compunction about it! You have every justification.

Make sure your pred is in your hand luggage so it won't get lost - and take a script with you just in case to prove they are personal medicines.

And have a lovely time!

[FrankP]

Hi Sheffield Sonia. PMR came on 12 months ago. I too was started on 15mg Prednisolone; the relief was instantaneous and remarkable. But it only lasted 18 hours and each day I would awaken full of the aches & pains. The Dr recommended 20mg and that worked fine for the full 24 hours. I am now down to 4mg & doing ok. Dreadful fatigue remains the problem. Hope your trip is going well. FrankP.

[SheffieldSonia]

A massive thank you to everyone who has replied to my initial comment. I was unable to reply immediately as I was coping with a reduction of my steroids, packing for our holiday, caring for my husband who has moderate dementia and dealing with the extreme tiredness common to PMR. But here we are are, in a hotel at Manchester Airport ready for departure tomorrow. Other than some stiffness early morning I am doing well on Twelve and a half mg of Pred.

If I feel up to it I can reduce down to 10mg whilst I am away but have enough tabs to see me through if I don't. I have learnt so much from reading your comments and feel more confidently armed to fight my corner with my GP if needed.

Take care all of you out there battling this awful condition. We will prevail.

[PMRpro Ambassador in reply to SheffieldSonia]

Have a good journey xxxx