Hi all you amazing people who respond to the likes of me and my issues. One thing that's keeping me sane is I keep a diary / log. I colour code morning, day, night (red, yellow, green) and look for patterns in pain.
Driving, travelling in confined spaces, carrying shopping, sitting to long on hard chairs all look to be precursors whereas walking , lying down and floating on water helps. I am thinking of looking at my diet along side this as I have a very nasty feeling red wine doesn't help me very much!!
Newly diagnosed in Dec 16 I was on 20 mg initially and cut to 15mg after 3 weeks. Saw my Rheumatologist Jan 23rd who wanted to reduce me to 12.5mg. However a family emergency cropped up which meant travelling unexpectedly to Australia- so she kept me on 15 til I return next week. Very sensible I thought. The flight was awful on my hips and have upgraded for my flight home. I stupidly had a "good day" yesterday and decided to have a swim- those days are long gone- it was more of a doggie paddle my arms hurt so much!
Am getting worried about hair falling out- Its so noticeably thinner I've been asked if I am on chemotherapy-and despite only 2 months of pred my face is moon shaped! Am I taking too much? Despite I am still getting bad days with the pain and fatigue.
I can't wait to reduce my pred when I get home but- feel I'll be so exhausted I may be tempted to hang onto 15 for a few days.
Any tips on how to manage a long flight will be gratefully received. Thank you for listening fellow sufferers and recoverors!
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Jude62
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Hi Jude62
Sorry to hear you have PMR too. Welcome to our Group 🌺
It takes a lot of adjusting to & flying over to Australia is hard on the body, it is sensible to remain on 15mg until you return, good on your Consultant to recommend that & yes stay on it for a few days when you return.
I've flown to Singapore & back from Australia, going out I had to add in an extra half days of Prednisolone but not coming back. You just need to work out your new 24 hour day & adjust accordingly, upgrading your flight is a good idea, we collect AVIOS so we can fly Business Class. If you can get up & take a walk around the plane at least every hour, go to the loo furthest away from your seat & do the stretches they advise to prevent DVT as that helps from getting too stiff.
l too used to find car journeys very tiring, so we stop pretty much every hour/hour n half on Motorway journeys, we still do but that's because of my knees!
I replied to someone yesterday regarding thinning hair, so I'll copy & paste that to you later.
Sorry it was a family emergency that took you to Australia & hope things are better now.
Best Wishes 🌺
Mrs Nails 💅🏼
• in reply to
From my Post to CarolRed yesterday, so if you follow that Post you'll get more advice & tips
I had issues with thinning hair at the front, when l first noticed it l was devastated & blamed the Methotrexate I'd recently been started on to aid the reduction of high dose Prednisolone but my Consultant thought it was the steroids!
I used Swell Shampoo, Conditioner & Serum; l checked with the Medics/Pharmacist & started Perfectil Vitamin Tablets for Hair & after about 3months or so I could feel little tufts regrowing. My GP offered me 'Regain' but l had high BP again thanks to the Prednisolone so l declined that offer.
My PMR made itself known to me for the first time on a flight to Australia, I vomited a lot and was full of pain. This was so embarrassing that I would always travel with the wherewithal to minimise the effects of that occurrence. On the way back, still under the illusion that I had a virus, I found the business class seats comfortable. I twirled my feet, wore flight socks and hobbled around periodically. I ate very lightly and had plenty of fluids. We flew with Korean Air which I can recommend for looking after you and very competitive prices. We stopped over in Seoul as part of the business class price. The hotel was wonderful, modern, with everything you could dream of to sort yourself out. The beds were blissful. The food (Western style choices too) was buffet style and like a banquet. Easy to choose light healthy things. All sorted, clean and ready, the second half of the flight was fine, better than resting at home. I don't think I'd fear it again but business class and the stopover where essential to me. Very fortunate to manage to afford it as my Daughter lives at Boambee Valley with her partner and my two eldest grandchildren. My middle daughter is going there with her husband my beloved 2 year old Theo and a new baby who is due in April and will be 2 months old when they fly out for the remainder of her maternity leave ( almost a year). So needs must, I have to go and I've found a way.
My daughter provided me with a strong, black rubber ring, and I bobbed about in the river very comfortably, oblivious to snakes and leeches. I agree, being in tepid water helps. Getting out of the ring with many helping hands was not elegant though.
Doesn't sound at all like you are on too much Pred. And you may need to stay at that dose for longer than a few days. I also have a fatter face and thinned hair. I think it's just part of this wonderful package.
Have flown to NZ via Singapore, and despite the cost would recommend Business class, so much easier, relaxing and comfortable. As Mrs Nails says the return journey doesn't need as much thought as outward regarding tablets. But if you're feeling a bit grotty an extra 5mg won't do you harm, just for once. Good to regularly have a short walk on plane, just to keep things moving.
Get assistance at the airport, you may feel you don't need it, but you do! Invariably there's a long walk, and that's the last thing you want. Just contact your airline at least 24hrs beforehand to arrange. And rest the day after, maybe longer, if necessary.
Good idea to stay at 15mg until you get back on an even keel, nobody likes being on Pred, but unfortunately you cannot rush things. If you do, you'll only end up having a flare and having to up your dose, and that's not what you want.
There have been two posts over the last couple of days regarding hair loss, you should be able to find them fairly easily, both titles are similar - Pred and thinning hair!
Good luck with your return journey, and slowly with the reductions!
If you are already thinking of looking at your diet - start now by cutting carbs, that often helps reduce or even avoid the weight gain. I lost 36lbs of pred weight while still on pred well above 10mg, it started while I was at 15mg.
I'm small (5'1" on a tall day) so economy class doesn't bother me greatly - just as well as we can't afford Business Class unfortunately! I've used Premium Economy, which in some airlines is more worth it than others. The best was Delta ordinary (I think), whatever US airline is Star Alliance anyway. Their ordinary is bigger than most people's Premium Economy at no extra charge!
One of the symptoms of PMR is myogelosis - your muscles stiffen after being inactive. It happened to me after just a short time. I didn't actually find sitting on a plane any worse, all things being relative.
Are your bad days coming after a good day? Where you then did more? Pacing is part of managing PMR - there's a thread about it somewhere. And you hair may be falling in response to being ill - it often takes a few months to show. DorsetLady will explain.
Take an empty water bottle with you and have the flight attendant refill it for you often. Drink, drink, drink! Airplanes are very dehydrating, even with no issues! Also, an inflatable back lumbar pillow is helpful. Agree with others, get up and walk around, stand in back and stretch often. Try not to do much the day before you fly. If you look online, there is a diet formula for less jet lag for the few days before you go. Pack nuts and other good snacks. Have a good trip!
You are smart to realize you need to stay on 15 a few days after your travel to let your body recover.
This comment "Driving, travelling in confined spaces, carrying shopping, sitting to long on hard chairs all look to be precursors whereas walking , lying down and floating on water helps." Is so true of me as well. I've had to get up from restaurant dinners, home dinners , funerals, swim meets, etc to go outside (or anywhere!) to walk around.
Try to get an aisle seat. I just stood next to my seat for quite awhile when the seatbelt sign was off. You can hold onto your seat back as needed. And can wiggle your feet and ankles a bit.You can then step into your seat as others need to pass by. I got some strange looks, but this really helped me on a long flight. You can even read a book while you stand.
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