Double bind

[SID3]

we have got ourselves in a double bind, of heat and Covid, Both my OH and I succumbed within two days of arriving in Provence, where the temperature is set to stay (unusually) at 37 for all the time of our stay. Fortunately we have space and family to help but I would be grateful for advice on how to handle the situation, in terms of Covid and PMR. I am tapering from 5 to 4.5 and though I still have sore upper arms, especially in the mornings, generally manage well enough. Thanks as always for your collective wisdom.

[SheffieldJane]

Not only would I stop my taper but I would follow sick day rules. These are detailed in FAQs. A temporary increase of 5 mgs to support your Adrenal system temporarily and then straight back to your original dose after about 10 days. You don’t want an adrenal crisis to add to your woes.Keep out of the sun, floppy hat, sunglasses, sun block, lose clothing, lots of fluids, lots of sleep. My sympathies to you both. At least you are in paradise for it all.

[SID3 in reply to SheffieldJane]

Thanks very much for the swift reply. I’mNot in a position to consult my GP from abroad and have only ever seen a rheumy on the first diagnosis 13 months ago so while this might be excellent advice I can’t double check it. At present it is just the fatigue of a slight fever with Covid that is the problem but I take the point that it could get worse. We do have an oximeter with us.

[PMRpro Ambassador]

Stop tapering, adopt Sick Day Rules and stay inside drinking plenty of fluids (doesn't have to be water but if it includes a Provencal rose I'd dilute it with fizzy water ) Not very cold fluids - hot UK tea is also cooling as it causes vasodilation and sweating. If you sweat a lot - you will need salts, possibly isotonic drinks from the shop. Or adding salt to orange juice works too.

The heat will also contribute to the need for Sick Day Rules, not just a mild dose of Covid. Is it cool in the mornings or are you having tropical nights? Are you with local residents who know how to deal with heat?

If it is cooler in the early morning I leave all doors open all night - but mine open onto a 2nd floor balcony so secure. you leave the open until the indoor temp is still below the outdoor temp and then shut them, drawing all curtains and closing external blinds if you have them. DON'T go outside into the sun at any point and resist the temptation to even sit in the shade when the temp is approaching its peak - here that is mid to late afternoon but I try to avoid being out after 12,30. With these sort of temps it is difficult to cool down once you have got too warm. However - if you have a breeze where you are, sitting in the shade with damp towels can be pleasant.

Wet towels wrapped around your legs are cooling as the water evaporates - you can drape them anywhere on the body but the Germans swear by "Wadenwickeln" (calf wraps) for bringing a temperature down! A fan increases the effect but don't risk overcooling - that makes the outside temperature feel even worse. Same applies to aircon - don't set it too low. About 6C below ambient is recommended for normal heat which probably means mid-upper 20s, NOT low 20s.

[SID3 in reply to PMRpro]

Another really helpful and detailed reply. Thank you.We are doing quite a lot of the things you mention but not the wadeneickeln - must try that. No aircon here and the nights are tough at 24C. The owners gave good advice e before they left on which shutters to close etc. Am as concerned about OH’s afib as about my pmr.

[PMRpro Ambassador in reply to SID3]

My afib hasn't been too bad - though I suspect that may have more to do with the tocilizumab than anything else! But I also don't have 24C nights to deal with, being halfway up a mountain is a boon! Night before last was the worst I've had at 17C early doors I think - yesterday evening was foul, still 28C at nearly midnight, but I woke to a thunderstorm that cooled it down and there is no direct sun at present, cloudy still. We have another 2 hot days to come and then it SHOULD go back to normal temps for the time of year - 25C up here.

Where in Provence are you? Haven't been to France for years and I do miss it

[piglette]

Rule of thumb says if you have any PMR pain STOP tapering.

[SID3 in reply to piglette]

Ive never been wholly free of pain - but it’s manageable

[piglette in reply to SID3]

I think a lot of us are never 100% free of pain, but you should stay the same as when you first took the steroids and they performed their magic.

[jinasc]

I assume you flew out to Provence. 2 couples I know - one set to Majorca and one set to Mexico --------- guess what Covid.

[SID3 in reply to jinasc]

No we drove and there was only the time having a coffee in the premier lounge (worth paying £10 extra for as it is not crowded) when we were exposed.

[jinasc in reply to SID3]

That is what I call sheer bad luck..................

[marionofnorwich]

I would also advise stopping tapering and temporarily upping the dose. I am not an expert but from experience I had Covid in April having just dropped from 5mg to 4mg. Although the Covid was mild, and i rested a lot, the longer term impact has been mega and i have had to go back up to 10mg, now 9mg and still really stiff. Really think i should go back to the 15mg i started with but cant quite bring myself to go back two years. Be cautious. I was unaware at the time

[SID3 in reply to marionofnorwich]

Thanks. I have decided to follow your advice and that of others to go to 10mg. The heat here is intolerable - I won’t make the mistake of coming in high summer again. And the Covid does not feel mild - I am still running a temperature.