hot flushes : I’ve struggled with these for about... - PMRGCAuk

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hot flushes

Freshairfiend profile image
24 Replies

I’ve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the steroids. I had Two absolute boilers last night.

I was on hrt for many years and came off because of the breast cancer risk. In the past, I tried everything else, although I didn’t give homeopathy much more than a month or so. I now take Utrogestan, which a locum gp recommended a couple of years ago. I supplement it with wellsprings progesterone cream in the summer, but now I’m using it in the winter.

I asked my gp and she just said that they will go away at some point……

So I’m interested in others experiences of hot flushes, how long they lasted, etc. I know peoples experiences of them varies tremendously, so this may not be a useful question, but hey ho….

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Freshairfiend
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PMRpro profile image
PMRproAmbassador

Not uncommon with pred - but indeed also with PMR/GCA themselves. More common with GCA but even PMR will do it.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

lots of people have issues… and there are related posts to look at… but it’s very trying at times…

jinoadby profile image
jinoadby

I started having hot flushes not long after starting pred at 15mg. I finished up with small fans in all my handbags and in all the rooms of my house, I also found the small rechargeable ones invaluable. My family and friends got used to me fanning myself, and I learned not to care what people thought when I was out. And then a couple of months ago when I had reduced to 4mg they just stopped and have not returned.

Freshairfiend profile image
Freshairfiend in reply to jinoadby

I started on 15mg too and reduced to 12.5mg a week ago. Your fan idea is good and I’ve just remembered I used to have a cold flannel next to my pillow to put on my head. Other people have said that they’re reduced as they got lower with ores, so here’s hoping… many thanks.

Dochaz profile image
Dochaz

I still get them. I can't say I've ever been entirely free of them. PMR symptoms began a few years before diagnosis with GCA/LVV at 63 and I frequently experienced hot flushes during the daytime and nights sweats even before treatment began, so I tend to think it's our disease rather than the Pred. I find myself in a sweat at totally unpredictable times during the day and the night. Nothing too unmanageable, it's just uncomfortable, and they generally only last for a few minutes but I do find the house too warm (OH complains if I turn the thermostat down!) and I sleep with the window open all year round.

Freshairfiend profile image
Freshairfiend in reply to Dochaz

Thanks, yes, ventilation and cool room are important for me to remember.

SnazzyD profile image
SnazzyD

I had chemo induced hot flushes and then from having my ovaries removed from age 41. I’ve never not had a hot flush on any given day but I no longer have to sit on a towel of an evening. I’m now nearly 61. Prior to GCA diagnosis I went back to having them every hour but once on Pred it reduced to just a permanent gentle sheen instead of monster flushes. Along with a steroid face and shiny red cheeks I looked like a dairy maid characature. It was Pred dose dependent. Since then I get them if go from cold to warm environments and if my body is unhappy about something. HRT has never been an option due to hormone related Ca.

Freshairfiend profile image
Freshairfiend in reply to SnazzyD

Thanks, SnazzyD,.

piglette profile image
piglette

Quite horrible, caused by the steroids. Mine started soon after I was diagnosed. Your GP is right, they go away as you reduce.

Freshairfiend profile image
Freshairfiend in reply to piglette

Phew! That’s what most others are saying. Thanks.

Kendrew profile image
Kendrew

Hi there Freshairfiend,

I have always experienced hot flushes throughout my 4½yrs on prednisolone. They don't necessarily happen on a daily basis but are constant in their frequent appearances.

Mine usually come on suddenly, make me feel hot and uncomfortable and then diminish again within 5 to 10mins. I thankfully don't usually sweat with them, although this has occasionally happened.

There's usually no obvious 'trigger' but occasionally more physical activity (tasks like ironing, cleaning, rushing) may bring about an episode.

My night times are generally no worse than the daytime but night 'flushes' always require me to throw back the duvet until I've cooled off.

I've discovered a few strategies that help me to combat the hot flushes.

- I wear layers rather than one thicker item of clothing, so I can easily remove something if I'm hot.

- I drink lots of water daily and avoid alcohol. (Water helps minimise them but alcohol definitely exacerbates them for me)

- I sleep with my bedroom windows open in the summer and a small window slightly open in the winter.

- I find I personally feel cooler and more comfortable wearing looser fitting clothes rather than tight or figure-hugging clothes.

I am currently on 2½mgs of prednisolone and still experiencing the occasional hot flush but they're definitely far less frequent than when I was on the higher doses.

Hope that helps a little.

Freshairfiend profile image
Freshairfiend in reply to Kendrew

Thanks, Kendrew. Very helpful. Most people say theirs have reduced with tapering…I’m on 12,5mg after 15mg for a month. Here’s hoping…

Gimme profile image
Gimme

I never really had hot flushes in the classic sense, in so much as I have always continuously felt slightly over-warm since the peri-menopausal phase started and post-menopause, became extremely intolerant of heat . Then I went on 15 mg pred daily for PMR and I started to get hot flushes and night sweats. Pretty uncomfortable but it only lasted the first few weeks as I had to decrease the dose quite quickly, due to intolerable psych effects. You might also feel better, once your PMR is stabilised and you start your taper.

Freshairfiend profile image
Freshairfiend in reply to Gimme

Thanks, Gimme. Let’s hope. I’m on 12,5mg now, but worse if anything, only been on that dose for a week tho.

Pixix profile image
Pixix

Dreadful. When first diagnosed I had to walk around with an old towel round my shoulders, my head would leak like a tap had been turned on. If you search for it on this site you should see many posts on the subject! It comes up quite frequently. Mine died down as my steroids tapered, but start when I do too much!! Also, I am having bad night sweats again, & get quite dehydrated. Not sure if they are connected with PMR, though.

Freshairfiend profile image
Freshairfiend

thanks, Pixix, I’ve had a look at the other posts. Most others say theirs improved as they tapered, so let’s hope..

PMRnewbie2017 profile image
PMRnewbie2017

Over the years I have come across ladies well into their 80's who still got sporadic hot flushes and they weren't on steroids. If you look at it physiologically, us older ladies may not have much female hormone in our systems but the hypothalamic thermoregulatory control systems are ageing too and remember that Pred affects the HPA axis of which the hypothalamus in one part. A quick look on the Web threw up a few articles and I have pasted some content below. (Sorry no hyperlink as I just cannot get my pc to do it on HU?)

health.harvard.edu/womens-h...

"In fact, in the past decade, a number of studies have confirmed that for some women, menopausal symptoms can last a long time after menopause. A Swedish study of 430,000 women published in 2002 found that 15% of women age 66 and 9% of women age 72 still were bothered by hot flashes. A 2008 U.S. study found that 30% of women still had hot flashes 10 to 19 years after menopause, and so did 20% who were more than 20 years past menopause. A 2011 study of more than 8,000 Latin American women found that more than 60% reported these symptoms 12 years after menopause.

A 2015 study of over 3,000 women from all over the United States reported that among women who began to experience hot flashes before their menstrual periods stopped, the hot flashes persisted in nearly 70% of them 12 years after menopause. And here's an anecdote: I recently received a letter in which a woman asked what could be done for her hot flashes, which continued to plague her—at age 92!"

Freshairfiend profile image
Freshairfiend in reply to PMRnewbie2017

Thank you so much for going to all this trouble. I didn’t know about the effect of prednisone on the hypothalamus, great knowledge. And Very interesting, if a little depressing!

PMRpro profile image
PMRproAmbassador in reply to PMRnewbie2017

You have a hyperlink - doesn't appear until you post and then it turns blue

PMRnewbie2017 profile image
PMRnewbie2017

Oooh seems the hyperlink has worked!!

Floridafan profile image
Floridafan

I’m still getting hot flushes even at 2mg Pred. Hoping one day they will go away but I do find that when there is a difference in temperatures I have a flush. Going inside after being in a cold environment, even from the integral garage into the kitchen will do it! I found that ice lollies were my saviour but I’m having to buy them more frequently because every time I have one my OH has to have one too 😂

Freshairfiend profile image
Freshairfiend

Mine loves ice cream, has a magnum every night, even in winter. I’ll search for sugar free ice lollies to have at night. Many thanks.

Brooklyn747 profile image
Brooklyn747

Oh the trials and tribulations that coreasedme with being a woman. For me menopausal symptoms started 17 years ago.I did find much relief from h.r.t. but after 14 years of continuing treatment I stopped and although many symptoms were less intense I felt super hot and uncomfortable many times in the day.

I honestly can't say that prednisone has increased the severity or frequency of symptoms and I've been on a tapering dose for nearly 2 years.

It's just not fair that this "normal " process seems to have no ending.

You are not alone. Good luck

Freshairfiend profile image
Freshairfiend

thank you so much. Your experience with hrt sounds similar to mine. Sadly it is definitely the preds affecting my night sweats. I’ve been sleeping a much cooler room the last two nights and that has helped.

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