I was diagnosed just two years ago with PMR and possibly GCA. I won't bore you all with the story but after many months on a very high dose of Pred I have managed to taper very slowly to 8mg. I have been on this dose for about a month but I'm wondering whether I should increase for a while. My husband and I enjoyed many years of cruising but he passed away just before this illness was diagnosed and since then I've been plucking up the courage to go on my own. So, a few months back, I booked to do a week's cruise from this coming Sunday. It seemed such a good idea at the time (!) but as I've got closer to the actual date, I've become more and more stressed. I'm sailing from Southampton and am having a taxi to and from the port so I've done all I can to take away the stress. But, I've been aware this last week or so that I'm feeling extra tired, a bit dizzy and the muscles in my legs are aching more. So, after all that preamble, I wonder whether it would make sense to go back to 9 or 10mg and, if so, should I start it now and can I reduce immediately to 8 when I get back?
Many thanks
Jan
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Janann25
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Me, I would go back to 10 mg and enjoy yourself and spoil yourself on the cruise. In the long term no harm done. Life is too short to wonder if to go up or down.............so go.
I hope your cruise is with Saga (commonly known in my world as Sex and Games for the Aged) well for those who want to play. 😉😉😉
See how you feel when you come back but wait a week to get back into the old routine, then use the DSNS method to start the long journey down to remission, remembering always, they both come when they want and go when they want, you are only managing to keep going with pred.
Thank you, I will go back to 10mg but I'll make sure I still pace myself! No, this cruise isn't with Saga - it's with a P&O Adults Only ship - but I'm cruising with a friend to the Norwegian Fjords on Saga in July. Have been to the Fjords several times before but this time we'll be calling at different ports. Love cruising, love holidays ❤️ !!
What a great and brave thing to do. It’s a good holiday for single travellers and as you probably know many cruiselines help those travelling alone to meet others. If you’re feeling anxious I’m sure that will feed into your symptoms in some way. When I did a cruise on 18mg I didn’t reduce for 3 weeks before to make sure my body wasn’t undergoing any reduction stress. I was awash with Pred but when you’re dropping below 10mg, depending on how much you absorb, you are dipping your toe into the low adrenal pool. If it was me I would go back to where I felt ok 9 or 10mg and tell your doc that’s what you’d like to do. I ended up staying on 18mg for 5 weeks and got into a bit of a lather about it. However, my body had a holiday from reducing and enjoyed an even keel (pardon the pun); it was lovely. It’s reassuring that they are so used to people with health challenges, I spotted 3 people on oxygen cylinders last time, but just one other Pred face like mine! Their medical facilities are ready for anything; I did a tour once and was amazed.
Now I’ve got to decide what to do about my cruise dose in July as I’m at a knee wobbling 2.5/2mg.
Well, as I say, it seemed a good idea at the time! I expect I'll be fine once I'm on the ship - as my friends say, I talk to everybody!! Apart from feeling lonely on my own in my cabin, I'm so worried about triggering a flare - it's been so difficult reducing, I don't want to do anything wrong. And I definitely don't want to return to a full moon Pred face - even some of my friends didn't recognise me while it was at it's worse 😡
I'm sailing on P&O Arcadia. She's an adults only ship and my husband and I cruised on her several times. They do a singles get-together but of course I don't know whether I would like it or not. I could always go to it and sneak out if it's not my thing😉😉
Of course you can! At best you’ll find people who will make your cruise more interesting and at worse you can have an attack of the vapours and retire.
I think I’d take 9 as of now, to make sure all inflammation is properly under control, and maybe 10 on Sunday (travel day). Once you’re ensconced maybe 9 will contain you, leaving an increase to 10 if you need an extra spurt!
Thanks for the advice. I thought it might be a good idea to increase temporarily but it's been so hard to get to 8mg, I didn't want to increase if it wasn't wise.
Hi Jan
Good for you, if you’re at your best at 10mg then that’s where you should be & start now.
If you haven’t started packing, get stuck in, l take all my clothes on hangers in poly bags so l can put them straight in the wardrobe with no fiddling about!
Go to the Singles Meet n Mingle as you’ll meet others, usually they put you on the same table for dinner & on P&O they have Morning Coffee for the Singles too (well they did last time l was on P&O)
I’m trying to decide wether to book a Cruise this Summer but l’m really not that great so until l get settled back on my Methotrexate l might wait for the Canaries in the Autumn!
Go for it!! There's nothing better at lifting your spirits than the thought of a cruise! I just love not having to plan and cook meals, not having to do any housework - and especially not having to,clean the shower every time I use it 😀
I will be following you onto Arcadia. As you leave I embark. She is such a friendly ship and small enough for people to get to know each other. Relax, stop worrying and simply enjoy being spoilt
You can up the dose for a week and then drop straight back to the original dose without problems - unless of course you feel better on a higher dose in which case you might want to consider upping the dose a tad anyway. Life is too short to struggle ...
I know it must have taken alot of courage , and although on the whole you want to go , it's understandable that you are feeling a little nervous about both having a trip alone , and , having a trip with PMR and its added needs.
Yep , PMR is not the best holiday companion , if only we could do with it what we can do with the dog and put it in a kennel to collect back later!
You have got used to your own body and you know you can feel the warning signs of a mini flare caused by pre holiday stress.
Don't let it get to you , it happens to many of us , and if you think it's time to increase your Pred to help you get through the stress , pre holiday preparations , the holiday itself with its added excursions and for a few days post holiday , you do it!
You can always let you GP know so you have a big enough prescription to last if you want to .
Try to also get all your packing done before Saturday so you can rest the day before the journey. It's usually the travelling to our destination that takes more out of us than the holiday or day out itself.
Better to be prepared and enjoy the holiday you've been looking forward to than to feel you have to stay and struggle at a lower dose.
You will also be pleasantly surprised once you get on board and have a good nap in your cabin after boarding as you will see the stress will be relieved and your trip will be the break you were hoping for.
Take care , have lots of tests between activities and allow yourself to indulge and relax after those initial nerves have passed , you will have a ball.
Thank you for your lovely reply - yes, I've taken the advice given here and have increased my dose from today. I've not actually started packing but at least I know what Im taking - and that's the most difficult bit!! It's been so good to have such encouragement from you lovely people on here - I'm actually getting excited now 😜
Hi Jan, l like you was diagnosed not long after my husband passed away, I’m convinced it was the stress that bought on the Polymyalgia after nursing him for 18 months, although the medical profession doesn’t know what causes it. I’m from Southampton so the cruises are very tempting. I do get flare ups, so I up my dose, I usually take 5mg of prednisone after gradually tapering from 15mg when first diagnosed last October. The pains usually start in my hands and arms so I take 10mg for a couple of days and it does the trick. Just make sure you take plenty of medication, relax and enjoy your cruise.
I love cruising! You have eliminated most of the stress already. Imagine being at Gatwick..... I’m off to Cyprus on June 1st and am concerned as I am in the middle of my first taper. Have a lovely time in beautiful Norway, I lived there for three years D
sounds like a good plan. But what do I know?? Give you so much credit for going alone. I too am now alone and love cruising. but not enough to go alone. Too bad we do not live closer.. I also have a bad visual problem, so travel is almost a thing of the past. Go and enjoy! Do every thing you can. Good luck! S.
Two of my neighbours became widowed within a few years of each other. One is quite deaf. They decided to go for a cruise together, and it went so well they've gone several other places together since.
Yes, I'm lucky that I have a friend who I've known since we were children and who also loves cruising. Sadly she also lost her husband just over a year ago so she and I have just booked a cruise together in July. So, after several difficult years, I now have good things to look forward to 😊 Thanks to the support of the caring people on this forum, I'm now more excited than worried.
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