In a previous life - pre PMR - I was a real sun worshipper, loving every moment I could spend outside no matter how hot. Mediterranean holidays in the mid 30s were the best days of my life.
I now seemed to have turned into my Mother who used to complain it was ‘far too hot’ the minute the temperature reached 20degrees!
I find I’m quite uncomfortable in even moderate heat, slightly light headed and generally ‘not quite right’
As a result My walking and gardening time is currently restricted to about an hour in the evening when the temperature drops.
Any views on why this is - is it a side effect of PMR, Pred, metformin for steroid induced diabetes, struggling adrenals or is it really just an ageing thing.
As ever thanks for the input of the members on this group
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Mandyq
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I feel exactly the same, lasted a total of 8 mins sitting in the sun today before retiring to garden summer house. I am on pred only so far, 63 years young and previously an avid sun worshipper☀️☹️
Probably a combination of all… adrenals not up to speed as yet…and certainly not regulating body temperature as well as they should.
Usual advice as you well know - keep hydrated, stay out of heat at hottest times of day, keeping house cool as possible, loose clothing - cotton preferably, plenty of rest etc, etc.
At least in the UK we know it won’t last THAT long 😏
Thank you DL - I’ve just read the Beeb article, some interesting suggestions to reduce the temperature at home. I’ll be sending husband upstairs to lift the attic door. Hopefully that will make some difference at nights.
I’ve just seen that now. I really like the idea of chilled socks and I’ve stuck some in the fridge in a plastic bag. Not sure the cat will like sleeping on subzero feet - then again in this weather she may appreciate it too
Haven't read the article but living in Cyprus it's difficult to escape the heat but so far I haven't had much of a problem. However, I did purchase some gel filled wine bottle coolers that snap on with velcro so they can lay flat as well. I bought 4 of them, store them in the fridge and place them under the bottom (sleeping) pillow about half an hour before we go to bed. When we're ready to sleep I flip the pillow over and have a lovely cool place to lay my head. I bought 4 of them so we can swap them over when the first set warm up.
"Any views on why this is - is it a side effect of PMR, Pred, metformin for steroid induced diabetes, struggling adrenals or is it really just an ageing thing"
Perm any x from that lot!!!
Autoimmune disorders can affect the temp regulation set-up in the body. Pred can cause sweats. Many medications used in chronic conditions can impair the body's ability to thermoregulate.
You would be better getting up early - it is coolest shortly before dawn - rather than going out in the evening when the heat of the afternoon persists.
And being in direct sun adds about 15C to the temperature in the shade! Don't ...
I was coming to that conclusion myself - PMR and associated medications seem a bit like pot pourri that’s past it’s best before date!
I have considered getting up early in the morning but I generally don’t take my Pred until around 7 and it takes an hour or so for me to get going. I may have to reconsider my early morning routine whilst we’re going through this hot spell.
If you don't want to take the pred sooner, have you tried splitting the dose so the effect carries over to next morning? And the earlier after 4am you take the pred, the less it has to do and the sooner it will work.
That was a suggestion from my original GP and I really had confidence in all his advice, so I’ve always taken that approach (currently 5mg before I get out of bed in the mornings and 2.5 with dinner) I find that has generally worked quite well.
My problem is that I’m a night owl - even when I was fit and fully functioning early mornings (that’s pre 8 am!) really were for the dawn chorus birds.
In my working life late starts on flexi time were the answer to all my prayers. Maybe I need to consider changing my ways!
I take my Pred around 02:00 ish and am normally walking the dog around 04:00ish, absolutely beautiful out at that time the last few mornings, warm, very pleasant, virtually no one around and the birds and wild life happily chuntering away.
Same here, Bcol. Initially found pottering around downstairs at 4 a.m. strange and not to my liking, but it really is a wonderful time of the day. Pred at 4 o'clock, which means by around 10 a.m. I am moving albeit slowly & not without discomfort. And so very peaceful with the last of the bats fluttering, birdsong, very little traffic. Should I eventually shake off this PMRGCA, I'll remain a convert to early to bed, early to rise.
I’ve been off Pred for about 2 months after 5 & a half years, with PMR & GCA. And 4 years ago I took the decision to move to my house in Spain permanently! Yes, I sweat like a pig, but only my head!! So my hair is sopping wet for most of the summer. No use washing hair to go out before 8.30….so it’s good that restaurants don’t open here till 9.00pm! I’ve had this problem ever since I took Pred so I’m hoping that at sometime my body will readjust itself & get back to normal. 🤞 I also have less tolerance to sitting out in the sun than before, but as the sun appears here more often, that’s no bad thing!
How lovely - you escape the worst of the British weather. I think the hotter countries have a totally different lifestyle approach which makes the heat more tolerable. Here in the UK we just rush out at the first sign of sun to try and soak up as much as possible because we know it won’t last.
I have always only sweat from my head. It’s so annoying. The pred did give me curly hair so at least now when it’s wet it’s kind of cute. I’m heading to Barcelona for first time in September. Can’t wait!
I am exactly the same , when we first started to get the odd hot day, i would say to people how hot it is !! This started almost as soon as i started on Pred . I am a real sun lover, I kept saying i was boiling until my family and friends told me it was hot but not boiling !! My face is like a beetroot and i pour with sweat. It makes perfect sense what Pro says about not being able to control your body temp. I am so glad to hear this as now i know there is a reason. Thank goodness for this site ! Good luck with keeping cool .🌹
One of the reasons I really like this site - apart from the mine of knowledge / experience - is that you realise that you’re not on your own with the little quirks of this condition. Thank you
I've never been much of a sunbather. I have that horrible white freckly skin that goes with red hair and I burn within minutes, but I did enjoy the warmth of summer, so long as I am not at work. Though I've been pretty heat intolerant since menopause and always sit in the shade, if I can. I've observed that heat intolerance does seem to be age related, although a lot of older people seem to have trouble keeping warm too. You've made me wonder now if all the meds that the elderly are generally on has something to do with it. I suppose that a combination of factors adding up is more likely.
Funny you should mention this, I've been looking forward to some sunshine and the onset of summer for weeks and now it is here, I'm struggling much more than usual.
I'm the same with 'redhead' skin (now white haired!) so I've never been a sun worshipper, but this year I've been feeling permanently cold. Locum GP says it could be steroids making me feel cold, but why after two years?Has anyone else had this? I'm also hypothyroid which can cause feeling cold, but I've had that for years without this freezing inside feeling. I'm actually comfortable today but still keeping in the shade of course.
I agree with getting up early if you want to do anything. The best bit of starting steroids was being up in my greenhouse at five in the morning when for the past few months I couldn't crawl out of bed!!
I can't take oral Pred so have four weekly Depomedrone injections, tapering every twelve weeks. Last injection was 40mg after twelve weeks on 60. It hasn't helped at all, shoulders and arms particularly stiff and painful..Prior to injection I'd had three strenuous events and Covid booster so I wondered if this is a flare. I did ask Locum GP at my surgery yesterday to increase back to 60 for next one. Sadly, my lovely GP who has known me for over twenty years has just retired on health grounds. That leaves just two Doctors at the practice, both of whom have taken it upon themselves to alter my medication in the past without ever seeing me! One said I didn't need injections and insisted I take the pills, despite my original Consultant sayimg I was to only have injections.. Pills made me very ill and took a long time to get well again..The other Dr decided to increase my Levothyroxine....which I refused because I know what my body needs! So I'm dreading the future. This Locum is lovely but he's only temporary.Anyway, I digress, I suspect my adrenals are struggling..I'm really run down at the momemt, recurring various infections, currently an ear infection making me very dizzy and sick and deaf and now a large painful cyst on my back..Taking antibiotics for all that.
Sorry don’t know anything about Depomedrone so give any advice on that… but it’s doesn’t sound very efficient for our illnesses.. they really need a constant dose - but if you can’t take oral pred, then it’s difficult.
Just sending best wishes and hoping for a better outcome once your recent/current issues.
Thanks for your good wishes..Injections have been working really well ( following Dr Dasgupta's plan) for the last year. Hoping this is just a hiccup and will improve after raising dose at next injection.
in the past I disliked the heat, found it hard to tolerate & burned very easily!! Now I embrace it & love it…but it does help my bursitis & sciatica & arthritis, so guess that’s why! I have dreadful head sweats…but they are just as bad at 50 degrees or at 80 degrees! I guess we are all different!
But you live in UK, too, right? It will only be a few days, then you will get it cooler…probably for another 11 months then!! Make hay while the sunshines! S x
Reduced tolerance to high temperatures is a feature other autoimmune conditions, including neurological ones, such as multiple sclerosis (MS) and myasthenia gravis (MG).
AG - that’s interesting, I wonder if it’s also a feature of PMR. Hearing all the responses makes me feel a little better - at least I’m not alone in this.
I’ve spent the day with a flexible chill wrapped round my neck - a cooling scarf, it’s made me feel much more comfortable.
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