on holiday and a hard lesson learned with this di... - PMRGCAuk

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on holiday and a hard lesson learned with this disease.

MalloryMoss profile image
5 Replies

since reducing effectively to 4mg (from 15mg in Oct 23) and getting on with life albeit at a much steadier pace, my Dr has recommended 1mg reduction every 8 weeks.

I am currently on holiday in Canada, we are in week one of 3. I decided to stay at 4mg and not even consider reducing to at least a week after my return. However I’ve been walking multiple times a day (sightseeing) and even managed a 3hr leisurely flat guided cycle tour (I felt great!), all was going well but then the stiffness in my hips and knees came back with a vengeance yesterday, so bad it was debilitating and as bad as pre diagnosis! Just trying to sit down then back to standing and walking became excruciating!

So I jumped on this fabulous forum and read up on the flare info and realised I’ve just done too much, so today I upped my pred from 4 to 6mg and added 2 x 500mg paracetamol and BINGO I’m back! Phew what a relief, I’m now able to enjoy my holiday but learned the hard way to keep an eye on activity vs rest.

I intend to drop back down to 4mg week 3 of our holiday as we’re cruising back to the UK, so plenty of time to recover, yoga, Pilates, massage, spa etc .

I then plan to follow the dead slow taper once I’ve recovered from the holiday 🤞

Any thoughts welcome

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MalloryMoss
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5 Replies
PMRpro profile image
PMRproAmbassador

It's all very well him assuming that you can just reduce to zero to a timetable but at 4mg there are two limiting factors: the PMR itself, which may still be active, and adrenal function which must return as the oral pred dose is reduced. Our mantra is the lower the slower - for very good reasons.

MalloryMoss profile image
MalloryMoss in reply to PMRpro

Yes totally agree. Dr has let me decide how to taper from 5mg. This forum is brilliant for following a plan and understanding this disease. Knowing I just had a flare and what to do was perfect.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

I intend to drop back down to 4mg week 3 of our holiday as we’re cruising back to the UK, so plenty of time to recover, yoga, Pilates, massage, spa etc .

Not sure about that, you are still on holiday and out of your normal routine, down to 5mg might be achievable.. but there' a fair amount of hustle and bustle on cruises . I think I'd stay at 6mg until I was home and back to normal.. [so a couple of weeks after return date]..

MalloryMoss profile image
MalloryMoss in reply to DorsetLady

Thank you, how I’m feeling right now I agree with you to stay on the current dose till I’m back home. Can’t tell you how relieved I am 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to MalloryMoss

Good, now enjoy rest of holiday....

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