Temperature Control - lack of...

Hello All, thanks for all the great posts, really helpful when I was out of the UK, newly diagnosed and confused.

I feel I'm doing well; just over a year after diagnosis I'm now at 4mg. I am taking it more slowly now, but have a recurring problem - I'm so hot! Yeah, I know, that's what my partner thought when he first met me, but this is no joke. I sleep poorly because I wake up sweating and uncomfortable. I look like a walking tomato that's just been caught in the rain and my hair - it's a hairy tomato - is permanently plastered to my skull. Really does nothing for my confidence, apart from the discomfort.

Has anyone else experienced this whilst reducing? We're off to Italy next week and I'm concerned about coping with ambient heat as well as my ridiculous body temperature.

By the way, it's not menopausal; I'm 64 and been there, done that. When I mentioned it to my GP she didn't think it was hormonal, but other than that she had nothing.

Thank you in advance for any advice.

[suzy1959]

I never had hot flushes from the menopause, but as soon as I was put on Pred. I got them frequently. 3.5 years down the line, I am not having nearly as many and they tend to stop altogether whenever I get below 12mgs. I also find that whenever I do something more physical, I get a lot hotter and sweatier than I used to .

[Hidden in reply to suzy1959]

Yes, Suzy1959, any physical exertion makes it worse. Unfortunately, I also get overheated sitting on the sofa. It's very clear, we all have our own little idiosyncrasies. Take care, feel well!

[PMRpro Ambassador]

It can be part of PMR or it can be the pred. I still have the occasional "glow" but it is nothing like as bad as when it all started. I'm also at 4mg - but it is 10 years plus since PMR started and 6 years since I started pred! But the last 3 years have been a rather different story once I worked out dead slow reductions were rather more successful!

I sleep with the windows open and, if necessary, a fan on. I have a summer weight duvet folded at the bottom of the bed but usually sleep with just a duvet cover/sheet over me. We live at 850m in the Italian Dolomites so overnight temperatures are pleasant, rarely above 16C, but most of this summer in the lower valleys even here in the north has been like the tropics, overnight temperatures of well above 20C.

Were are you going? At present a lot of Italy has overnight temps of under 20C - none of the Spanish plume here! It is expected they may rise a bit from Wednesday to the low 30s, low 20s overnight. During the day we retreat indoors for the afternoon if it is too hot, blinds down and windows closed. You air the room in the early morning and then shut them and drop the blinds.

Always walk on the shady side of the street - and the Chinese always carry an umbrella to have portable shade as well as a hand fan! If I sit on the balcony when it is hot it is with the curtain drawn across the front and the electric fan pointing at me - then I can survive mid-30s!

Splashing water over you and not drying it off helps cool you down and running cold water over your wrists and back of your neck is a quick cooler - think tennis players and their ice towels!

Churches and shops are good cooling off options - providing the latter have air-con. Air-con isn't that common here though.

[Hidden]

Hi PMRPro, wow, you certainly can claim to be a pro with six years on pred. I started on Medrol in Greece but changed to Pred back in UK.

Your tips are very helpful, thanks. I've just put my hand fan in my travel bag. The water splashing sounds good, I'll definitely try that. My daughter lives in Barcelona and I've heard about the excessive heat they've been having. She says that she mostly wants to sleep; as she's on holiday from her teaching job, she is able to do that, when she's not at the beach!

We're going to Le Marche for a month, as we hope to move there next year. Like you, I already sleep with only a duvet cover, but usually kick that off at some point. And this is English nights, when it can get quite cool. I'm used to spending summer in Greece, where it can reach 42 C in August and I never had a problem until I started Medrol/Pred. It seems strange to me that I'm having more problems with not being able to control my temperature now I'm on a lower dose. Oh well, at least I have no pain or stiffness; as you suggest, I'll take it slowly.

Best wishes to all fellow-sufferers.

[PMRpro Ambassador in reply to Hidden]

How did you get on with Medrol? I started on prednisolone in the UK which was fairly much OK, no real weight gain but it all redistributed to midriff and face! Then I had about 9 months on Medrol - and that was hell on earth! Massive weight gain, hair and skin went mad and I grew a beautiful black beard - not nice at all. I had other problems, some due to PMR, some due to Medrol plus the wrong antibiotic, and my GP offered me Lodotra, a delayed release form of prednisone which is available here in northern Italy. All the weight went (though I have cut carbs drastically as well and without that I doubt it would have gone so well) and so did most of the other problems! Really back to normal now on 4mg - 3 years ago I was in a mess at 20mg Medrol.

Where in Le Marche? Inland in the mountains or the coast? I'm not so familiar with Italy - I live in the German-speaking north, at the northern end of the Dolomites, because we are fluent in German and it saved learning another language. Over 90% of the population here are native German speakers and South Tirol or Alto Adige is very well regulated and disciplined but with the good bits of Italy! We love it - and our local medical care is superb but is different from further south.

I think the intolerance of the heat is partly PMR and partly the pred - but this summer I've not had much trouble. We were in China for 3 weeks and the beginning and end were HOT (and steamy) but I had no problems at all. We came home for a week before going to the UK and found the afternoon temperatures in the mid-30s here not too bad at all after China! All the locals were wilting though.

[PamelAnneCT]

So much good info. The sweats are horrible! I take a shower and the effort of drying off gets me so sweaty I'm ready to shower again. I have air conditioning (a necessity here in Connecticut) and still get damp with the slightest effort. Can't wait until fall arrives!

[PMRpro Ambassador in reply to PamelAnneCT]

I don't go to the effort of drying - it used to finish me off in the early days of PMR! I blot off the drips, wrap myself in a towel and do my emails - by which time I'm dry!

[PamelAnneCT in reply to PMRpro]

I'll be trying this.....

[Hidden]

Medrol -what a p.i.t.a! Yes, I became very hairy, had to shave my face all over, and the hair on my head became very fuzzy and stuck out at right angles; I looked like a chimney sweep's brush! I was rather wary of weight gain so from the off I eschewed simple carbs e.g potato product (although in my role as a saint I do cook very good chips for my partner!) nothing farinaceous (mmmm, hot buttered toast, a distant memory) and no white rice. I have put on a bit of weight and also had moon face on Medrol but not pred, but nothing too horrendous.

There was an article in the Sunday Times today about the benefits of extreme fasting, apparently very powerful in alleviating auto immune disease. Or is it just another fad? I've also read a lot about the paleo diet, but decided very quickly that I felt I'd rather be a bit poorly than become so obsessed about what I ate. It seems like a miserable regime to me. But an occasional session of not eating, maybe once a month I think I could do.

What a good tip about not bothering to get dry after a shower. I too have found I sweat profusely whilst towelling dry. I rather wish I lived in isolation so that I could just air dry outside!

Where do we want to live in Marche? Not sure yet; somewhere between the Sibellini and the coast, I think. I'm not a great fan of the beach, but visitors would love it. Annoyingly, I speak reasonable French and some German, but as Italy is the dream it does mean learning a new language! I think we'll begin with the universal language of wine...

Great to hear from you all, it's cheered me up to share, not something I do often as I usually just get on with it. My partner is supportive but can't entirely understand how this feels, especially as I don't look ill. Thank you all.

[PMRpro Ambassador in reply to Hidden]

No it doesn't - the whole of South Tirol speaks German to some degree or other! It is one of the official languages and that is why we came here. We had worked in Germany and when we returned to the UK said we would live in a German-speaking region again but not necessarily Germany as we left just as the wall came down. It has changed a lot since then.

If you live in the southern end of South Tirol/Alta Adige there is more Italian spoken and much of it, especially around Bolzano on the border to Trento, is very Italian. We have wonderful wine and it is easy to get to Lake Garda instead of the coast. Venice isn't that far either. And the mountains are nicely cool in the summer heat. Do come and view - even visit.

I learnt about no carbs very late on and yes - frizzy hair and a beard (dealt with using my Braun epilator). On the very low carb approach I have lost 19kg - which will return a tiny bit rather easily when I splurge on carbs on holiday! Fine at home where I can control the menu and on holiday in Italy - the UK was awful!

We're obviously twins - I do good chips for himself too. I don't do extreme fasting - must look for that article and see if it is "free to air" I refuse to pay for the online Thunderer. I do mini-fasting. I eat dinner in the evening and then lunch at about 1.30pm with nothing but cups of tea in between. Rarely hungry unless I have snacked on carbs - but that always catches up with me in the form of wind...