I’m new to this group and am looking for some guidance!
I’m 46 years old and was diagnosed with PMR around Christmas. I’m currently taking 20mg of prednisolone a day, although I’m hoping that this may be reduced soon but in reality I’m not going to hold my breath as I’m still getting aches.
I’m going away in a couple of weeks with long haul flights to the Far East. Does anyone have any advice about how I should time taking meds - the time zone I’m going to is 8 hours in front.
Also should I be taking any extra precautions with regards to the flights due to the medication?
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GingerK
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Take Pred at normal time on flight day (assuming that’s morning time), take another dose (or maybe 10mg depending on how you feel) sometime on the flight, and then get back into your normal routine local time. In essence you’re taking 2&half or 3 doses instead of 2 in a 24hour period. That extra won’t do any harm.
Ask for Special Assistance at airports, don’t be embarrassed or shy, it’s always a long way to walk, and makes life so much easier. The cabin crew then also know to look after you a bit more!
Take your medicines and copy of prescription in hand luggage. Make sure the day after arrival you rest!
I felt a fraud first time, but if you happen to have a bad day then you’ll be pleased you requested it! Travelling is stressful at the best if times but with PMR it’s more so. But the choice is yours! Maybe try without it on outward journey, you can always request on way back if necessary - just go to airline website.
Thank you again for your advice. I hate the feeling of giving in to the condition after I’ve battled on for 8 months with the pain. But I suppose I need to learn to accept help when it’s available 🙂
Forgot to say, as soon as I get on aircraft I change my watch to the time of arrival country, that way you’re already in the mindset re tablets, sleep,etc.
You will really appreciate the assistance. For other reasons I got it in mid 40s. The rule of pmr and other illness is make sure you save the mental and physical energy you have for enjoyable things.
I know the feeling having been through Heathrow/Rome airports in August on 18mg (54, GCA). Would you feel a fraud if your leg was in plaster? I would suggest not. Pred is your plaster cast, it’s just that nobody can see it. Lots of people have invisible problems like MS, ME or Lupus and you probably wouldn’t judge a 46 year old with those, so why do you get a big stick?
Heathrow could learn a lot from most other airports! It’s really pants compared to most! And it’s not because it’s in UK, other ones are fine - as is Cross Country Trains !
Don't feel a fraud; until I developed PMA I worked at Manchester Airport as a wheelchair assistant. Loved it but had to give up when my condition worsened and of course pandemic put paid to flying.So,please use it rather than trying to walk long distances from check in to Gate. Also, ask for a lanyard which identifies you as a traveller needing assistance. Its recognised all over the world so you don't need all the formalities of asking. And, you will receive great assistance from all those involved except Air France ( bit snooty!)
Hi GingerK, I would certainly endorse what others have said having just returned from Australia via South Korea. The extra Prednisalone in the system really holds you up. Don’t dream of reducing until you return and everything has settled. Your inflammation has gone unchecked for a long time and won’t calm down overnight. I would also council that you be very careful about food hygiene and what and where you choose to eat. You have a compromised immune system and need to be mindful of that. Have an absolutely wonderful time and let us know how it went when you return. Getting into the vit D laden sun almost banished my pain and lifted my mood. The Australian time clock seemed to suit me better too ( 11 hours ahead) I adjusted quickly and didn’t need afternoon naps.
Living in New Zealand just about means anywhere is long haul! Recently did a trip to the USA, about 13 hours with no problems re pred. I take mine at midday. I just work out where and when 24 hours is, look at where I will be 24 hours from then and adjust the times accordingly, say between 22 and 26 hours, then when I have arrived gradually adjust back to my normal midday time. Hope you followed that! You could take 2 watches, one on your home time and the other to destination time. Use your mobile alarm to remind you to take your meds. Make sure you take 2 or 3 emergency lots of pills stored in different places. Wear those compression stockings on the plane. Understand your anxiety being a 'newby' but we all were once , I am sure you will manage very well. Have a great holiday, John
Have a wonderful time! I love getting extra help! Pampering is my middle name! My Doc wrote a letter re. early boarding, lifting my suitcase and putting in overhead compartment. It takes all the stress out of travel. Well can’t wait for my massage at 2:30 this afternoon! As many have said before, we don’t look sick! Thank G-d!
Thank you for the comments and advice, everyone. From your responses it sounds like I should just swallow my pride and ask for some help! This is a fault of mine - I’d much rather be the one giving help than asking for it . Oh well.....they say every day is a school day; perhaps this is where my learning curve should begin 😏
It is hard when your independence is nibbled away for a while. My family still despair of my refusal to ask for help until I really really have to. It is getting easier and hopefully I will reclaim it.
Have a very happy holiday and hand travel stress to airport employees. 😎✈✈
I made the mistake of leaving my Pred at home once (luckily had a leaflet about PMR with me & the French pharmacist was very helpful). Do take extra pills in different luggage in case something goes missing enroute. Otherwise I am sure the warm weather will help. Just take it easy on some days & you will be fine.
The GP. As I responded so dramatically to the Pred that was the diagnosis that we settled on. My PV levels were the only markers that were ever elevated. Also my pain came on predominantly in the evenings but when it hit..... boy did I know about it! I was sleeping sitting up for about 4 months too. The magic Pred has given me my life back!
First of all - you may never be totally free from aches. Some people aren't. So don't necessarily wait for that but be careful about reducing in too big steps (not more than 10%) or too frequently (3 weeks minimum, preferably a month at a new dose).
The long day of travel (east to west) I take my normal dose and about 20 hours later I take extra to cover the other x hours until the next dose at the same local time as I would take it at home. The idea of taking pills at the time you would at home (keeping uK time in other words) really does not work with pred, it messes up your circadian rythms too much. The short way (west to east) I take my normal dose and go back to taking it at the normal time at home.
I try to stay at the airport the nght before if if is going to mean a silly early start to get there. And I request assistance. I too thought I didn't need it - until the walk from the wrong end of the multistory carpark to the terminal at Munich airport nearly had me in tears. On the return I had a wheelchair to the car - and was in a fit state to drive home.
Thank you PMRpro. I’ll give the whole thing some careful thought. I don’t know how the traveling will affect me, so maybe I should err on the side of caution with assistance. Fatigue creeps up on me and then sidesweeps me, so I do need to be realistic and fair to myself.
Unless you have been through the airports before you can't know what it will be like. And even then - Munich would be fine except when they dock at a gate all the way over to the left, and the luggage carousel is the one all the way over to the right!!!! At the opposite end of the terminal block. Hauling luggage makes it all worse. Standing at security and immigration also comes into play. With assistance you are sitting the entire time except for going through the magic eye and it makes such a difference. It was less the walking and far more the unknown of how long immigration would take that convinced me - and even in the USA I was taken through the crew immigration queue and the officials were like a different world to normal!
Nearly forgot - when I flew to S Korea (where are you going?) I got there feeling really quite chipper. We were being entertained to lunch by our university host and suddenly, halfway through the meal I could have slept in my soup! I went to bed and slept, waking long enough for a large glass of wine about 9pm and went back to sleep! I got up at silly o'clock to get to the train across Korea and slept a lot of the way on that and went to bed at the hotel when we got there and slept. It was raining so I missed nothing. Having done that I was fine for the rest of the trip - and it was pretty hard work. So now I make sure either we arrive 24 hours early or there is nothing essential on the first day. I get there and pretty much go to bed, surface for a meal and go back to bed. I did China like that as well as two trips to the west of Canada within 6 weeks (I know, should have stayed).
It looks as though the more you or anyone travels, the more you get used to having assistance and how that helps. I am plucking up courage to do the trip ro Brisbane, where I have 2 daughters and their families, don’t think I am ready to yet. Last time was when my husband was still alive in 2010, certainly assistance helped him, though if the buggy was full, I was almost running to try and keep up!. This time if and when I go I think I shall draw on some savings and go business class. I know I’m lucky to have some, but I have other medical conditions, and as a good friend always says,
There are no pockets in shrouds!!
Not being miserable, the bulbs are bursting through in the gardens, Spring is on its way, and there’s a blue moon tonight!
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