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PMR has been with me since 2019 though it hasn't affected my life too much and I have been relatively pain-free. Saying that, reducing the dose below 8mg has been difficult, as I have had quite a few flares, which when looking back, have ALL occurred while we have been travelling. While very slowly tapering to 7.5mg, 2 weeks ago on a trip with my son and his family ( a 3 and 5 yr old), I flared again. I did as recommended and upped my dose by 5mg, which has brought it back under control.
My problem is that I am due to drop back to 8mg tomorrow, but will be heading off again in less that 2 weeks for a month in Japan and a cruise. I was wondering if it would be sensible to drop back to 9 or even 10mg (rather than 8mg) and stay there while away, or if there are any other ideas as to how I can enjoy the next month without another flare (apart from staying at home for the foreseeable future!!)
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Harwen
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Typical PMR stiffness and pain with the flare.. last one it hurt to walk down stairs, or anywhere. One flare happened a couple of days after an international flight ( Hobart, Australia to Santiago, South America) the others have all happened 5-7 days into a trip that has been interstate within Australia but never had one travelling around Tasmania. It seems that a complete change of scenery warrants a lot more respect in managing this disease than I’ve allowed.
I ask because I had similar reactions without PMR, just GCA and Pred and it would kick in 1-4 days in. Sitting on a plane (being static, poor posture, low pressure etc) is just for starters. Add to that, moving luggage, being in cars for hours or frequently, walking extra (stairs on cruises!), different beds, being active for longer than usual, fewer smooth surfaces to walk on, new shoes etc etc. I found after extended periods of constant and tiny movements that my head had to correct for would send my neck and shoulders into a mess. Your brain says you are having a great time, but your body didn’t give permission for the relentless workout and change of climate/food/sleep pattern…..
For me, rest, painkillers if needed and much more copping out did the trick for me, but we are all different. On no account would I reduce on a holiday.
And it is why it really does pay to book airport assistance when travelling - you keep some reserves for when you get there! No hurrying, no stairs, no unexpected long walks and they haul your luggage around too!
Personally I never attempted a taper just before or during a holiday or significant event - you are out your normal routine, and even though it might be enjoyable in many ways, it’s different.
We also we suggest dropping back to just above the dose that caused the issue [and as your seems to be 8mg] then why risk going back to that dose again, especially with what’s ahead.
But are sure it’s always a flare of your illnesses and not associated to adrenals -they need to be thinking about waking up at that dose.…or a combination of both.
Thank you. Your reply is much appreciated. I think that I’ll go back to 9 and stay there until I am back. I’ll also watch that I’m stable on my dose and not reduce if travel is in the diary.
don’t think it’s adrenals because the first one happened when I was on 11mg.
I think tapering whilst away from normal routine is risky, would think if 9.0mg worked before then stay there until after you return from holidays. If uncertain about 9.0mg then go with 10.0mg.
The other point you mention that is associated with your flares is the dose of 8mg. You aren't tapering relentlessly to zero, you are looking for the lowest effective dose and maybe that is just 8mg with a quiet life - but the extra effort inevitably associated with travelling takes you over that threshold? Especially if you really are at the limit. Even 1/2mg more might make the difference. And maybe a holiday from tapering until well after you are home and fully recovered would be helpful. But really - don't ever taper during a change of scenery!!!!
A tour around Japan with rest days every third day, (never been before), then a cruise from Japan to Singapore..a few days in Singapore then home. So looking forward to it - its been a long time in the planning.
We are away on holiday at the moment. I have only been diagnosed since the second week of August. My GP already talking about reducing dose of prednisolone. I asked if I should wait until I get back home to my regular routine and environment. Her reply was 'oh yes, don't think of altering your dose while you are away and travelling. Come and see me when you return'.
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