Hot sweats - solution: Following on from my... - PMRGCAuk

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Hot sweats - solution

JanetRosslyn profile image
50 Replies

Following on from my previous post applauding my marvellous Rheumy… She got me an appointment with an Endocrinologist this week, and he came up with an amazing solution for my hot sweats! (Sarcasm alert)

Background: My GP stopped my HRT in 2019 when I was diagnosed with GCA and absolutely refuses to reinstate it, claiming I would be at high risk of stroke. I have 20 to 30 full body sweats every day and I am drenched every night. After 3 years I’ve sort of got used to it, but my Rheumy could see no reason to stop the HRT and having witnessed several episodes she reckoned the Endocrinologist would be able to help.

Well, I honestly thought I’d tried everything, but after a five-minute consultation with the Endo he came up with his own marvellous remedy that I’d never thought of. Are you ready? It’s mind blowing. His solution? Just spray on anti-perspirant!!!

Thankfully, he doesn’t want to see me again. Honestly, I just keep laughing 😊

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JanetRosslyn profile image
JanetRosslyn
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PMRpro profile image
PMRproAmbassador

It does get listed on some approaches to hyperhidrosis. Does it work?

JanetRosslyn profile image
JanetRosslyn in reply to PMRpro

Honestly, I'm not even going to try it. I don't really imagine that spraying my whole body is a practical solution.. Thinking of it, it doesn't help with my underarms which I do spray! And it certainly wouldn't help with the nausea that precedes every episode.

PMRpro profile image
PMRproAmbassador in reply to JanetRosslyn

Would have been more to the point if they'd addressed the GP's objections to HRT. I thought the cancer threat had been dismissed - again ....

JanetRosslyn profile image
JanetRosslyn in reply to PMRpro

Recent PET-CT scan and thyroid scan/aspiration ruled out cancer, thankfully, and thyroid blood tests normal. As for my GP.... I give up. I've managed for three years now so I'll just keep going :-)

The GP's objection to HRT is a high risk of stroke because of GCA. The Rheumy doesn't share these concerns. I don't drink, don't smoke, I'm not overweight, there's no family history.

Like I say, I give up.

PMRpro profile image
PMRproAmbassador in reply to JanetRosslyn

jinasc is on HRT - older than you by a bit, smokes like a lum ... HER GP tells her NOT to stop smoking, it would kill her!

jinasc profile image
jinasc in reply to PMRpro

Cheeky youngster 🐵- but all true and my Rheumy (Clive) advised me to avoid a Care Home as you are not allowed to smoke and he did not fancy attending my funeral.

Bet most folks on here - won't know what a "lum" is. That does not include Scots.

JanetRosslyn profile image
JanetRosslyn in reply to jinasc

I got it. I'm from the North with Scots ancestry :-)

SheffieldJane profile image
SheffieldJane in reply to JanetRosslyn

Me too. It’s a chimney. Been feeling very nostalgic for Scotland with all the footage for the queen. I was brought up in Edinburgh.

PMRpro profile image
PMRproAmbassador in reply to jinasc

I like to extend their linguistic knowledge ...

Baner profile image
Baner in reply to PMRpro

And did you know they are not “cigarettes” but “tabs”, my husband is a Geordie so I’m very well versed with northern idiom. Now the weather is getting cooler we will be putting our “ganseys” on 😂

PMRpro profile image
PMRproAmbassador in reply to Baner

I know what tabs are - haven't smoked for over 50 years ... It always surprises me how many words I knew in England as a child actually stem from the north and Scotland. I assume they spread during the war.

JanetRosslyn profile image
JanetRosslyn in reply to Baner

I'm from Sunderland... Haven't heard the word 'gansies' for years! That made me smile :-)

When I was about 14 I was visiting family 'down South' when the ice cream van came round. I asked the ice cream man for a cornet with 'monkey's blood' on it and he looked horrified. He couldn't drive away quick enough! I didn't realise it was just a northern term and that everyone else called it raspberry/strawberry sauce.

Baner profile image
Baner in reply to JanetRosslyn

Hi my husband is from Ryton in Tyne & Wear and although he has lived in the south for last 40 years, because of work, he still has his accent and still refers to his jumpers as gansies, and regards the north east as home. We regularly go back to visit family but the long car journey is a bit much for me at the moment, but hoping to “gan hyem” again soon x

Sharitone profile image
Sharitone in reply to PMRpro

ευχαριστώ!

in reply to PMRpro

would kill me too. Now I have to look up “ lum”.

PMRpro profile image
PMRproAmbassador in reply to

Chimmuck???? If you live in the Cotswolds ...

Iamfedup profile image
Iamfedup in reply to JanetRosslyn

I have been on HRT from 39 to 70! For the same reason as you, dreadful hot sweats!

Sanekate profile image
Sanekate in reply to JanetRosslyn

I'm the same 10 years after Menopause, and have the nausea too. Got taken off HRT when my sister develooed breast csncer. I've never heard of anyone else that experiences the accompanying nausea til now. Horrible, isn't it?

JanetRosslyn profile image
JanetRosslyn in reply to Sanekate

It's awful. I'd not heard of anyone else either! First I feel really hungry... then within 15 to 30 seconds it turns to nausea... Used to eat to try and stop it, but that didn't work, I just got fat. Tried drinking a glass of cold water instead, but that doesn't make any difference. I just concentrate on slowing my breathing and counting ever so slowly to 100, or sometimes 200, and then it's gone. Until the next time :-)

Suffolklady profile image
Suffolklady in reply to PMRpro

I have got hyperhidrosis PMRpro had wet hands and feet. It’s truly plagued me all my life. Had sprays specially for it but it was a waste of time. I did at one time take Pro-Banthine that helped but made my mouth exceptionally dry. Then I had out of the blue ‘high blood pressure’ and was put on Propanol and amazingly after 63 years my hands and feet in fact everywhere stopped sweating. It took a long while to work out what had caused the change I thought it was Pred to start with. Once my B/P was stable I came off it my sweating was greatly improved but it did returned. My Doctor is aware of this fact now and I have some in hand if I need it. Googling the drug there’s mention of controlling excess sweating how actors use it when on stage.

PMRpro profile image
PMRproAmbassador in reply to Suffolklady

Interesting - my grandson has it too. Not sure what they gave him. He's a big lad - I wonder what his BP is!

Feelingpoorly profile image
Feelingpoorly

I absolutely laughed out loud at your post ………unbelievable 🤣🤣🤣

I also suffered with horrible sweats not quite as bad as yours (at its worst I averaged 12 to 14 over a period of 3 years ) in fact I still get extreme flushes but on average one a month (I’m 68)

I haven’t taken HRT but what helped me was to change my diet and eat cool or cold food. I even drink my tea and coffee when it’s much cooler. So I eat cold meats, salads and all traditionally hot food I wait until it has cooled considerably before eating. Of course I usually throw in a couple of glasses of water or juice each day.

Not a huge revelation from me but it might help a little. Good luck on finding a solution .

SheffieldJane profile image
SheffieldJane in reply to Feelingpoorly

I do that instinctively- Greek style. Also cooler showers, nothing to tip me over.

jinasc profile image
jinasc

Try Extract of Sage............15 drops in water and also Evening Primrose Oil.

Before buying discuss with your Pharmacist for compatibility as they are homeopathic remedies and when on medication you should also check.

BTW: Tell your GP you know someone who has been on HRT (Premarin) since I was 32 (hysterectomy). I am now 84 and still take 0.625mgs daily. Took a long time to get down to that one tablet.

My GP retired and a new one came along - took a while for him to understand when he wanted to stop issuing the prescription that he would have one big fight on his hands. He gave in.

Lately there has been discussions by medics that HRT can mitigate bone loss during and after the menopause.

I would also ask to be referred to obstetrician 20 to 30 sweats per day sounds to me excessive. Before I went onto HRT I was sleeping on a bath towel with a spare handy and a towel on my pillow.

JanetRosslyn profile image
JanetRosslyn in reply to jinasc

Thank you. Oh yes, the drenching night sweats are the worst, and regretfully impact on intimacy too! Say no more.

When I was first put on HRT I didn't really want to take it, but things had got so bad I was desperate. The HRT worked like magic and after a couple of years I decided to cut it down slowly to see what happened , and I got down to half a tablet a day with no ill effects. Any lower and the symptoms returned. When the GP said she was stopping it altogether, I explained this to her. Her reaction was that half a tablet a day was doing me no good whatsoever and that it was 'all in my head'. My argument was that if half a tablet a day was doing me no good then surely half a tablet a day would do me no harm? She wasn't having it.

I think you're right and I should now ask to be referred to an obstetrician (or gynaecologist? )

jinasc profile image
jinasc in reply to JanetRosslyn

Could not remember the word Gynae - put it down to 84 years and...............

SheffieldJane profile image
SheffieldJane in reply to JanetRosslyn

Poor you! Your GP sounds like a horror. I cannot tolerate this attitude in doctors anymore - it makes my blood boil.

JanetRosslyn profile image
JanetRosslyn in reply to SheffieldJane

I honestly don't know who my doctor is. I used to have a lovely GP, but he left, and now I speak to someone different every time.

PMRpro profile image
PMRproAmbassador in reply to JanetRosslyn

She'd be my past GP. I object to any doctor who tells anyone that an effect is "in your head" - and even if it is, if it works, that is all that matters,

I would write to the practice manager outlining the problem and saying you want either a sensible GP or a referral. And I would complain officially about her attitude.

JanetRosslyn profile image
JanetRosslyn

Thank you. Yes, we each find things that help us. I've learned NOT to put a fan on when I'm flushing or to remove any clothing - it feels nice at first, but then my inbuilt thermostat recognises the cold air and heats me up more to compensate!

Blackcat1M profile image
Blackcat1M in reply to JanetRosslyn

could I make a suggestion, jinasc said just what I was thinking, I have two cups of fresh sage leaves every day.

When I was told after fifteen years to stop HRT the doctor recommended I grow my sage and make tea, I put three sage leaves in a cup and pour hot water from the kettle and steep for four mins.

Also he said try running cold water on my wrists (I forget why) I do this and it cools me down.

I had patches HRT and one morning my OH woke up with one on his bum !!!

PMRpro profile image
PMRproAmbassador in reply to Blackcat1M

Cooling at pulse points cools the whole body - said to be because there are lots of small veins close to the surface too cool down, Cooling one area of the body draws heat from the rest of the body, Drinking/eating cold items isn't as good for you in general as drinking room temp things - because it draws blood to the stomach and warms it up.

Abbey17 profile image
Abbey17

oh if only you’d known before! 🤦‍♀️🫤😁

RoomsonFire profile image
RoomsonFire

sooo .. Patronising ! My GP has suggested a trial of Venaflaxine , An Antidepressant that has worked on reducing Sweats- have you tried this treatment- I’ll report how It works or not for me - Best wishes 🙏

Zebedee44 profile image
Zebedee44 in reply to RoomsonFire

Roomsonfire, a word of caution, I have been on venlafaxine for almost 30 years for anxiety and depression and I still suffer daily hot flushes for no apparent reason. Also I now have a physiological dependency on venlafaxine and not one of the many GPs I have seen over this time has ever offered to wean me off it.

RoomsonFire profile image
RoomsonFire in reply to Zebedee44

Thank you for sharing your experience Zebedee 🙏 I’ve had PMR for 18 months and Prednisolone between 15 mg and 8 mg - currently on 10 mg - I cannot put up with this constant Sweating so desperate to find a Solution- I’m likely to need a Suitcase soon for all these Medications ! Not ideal to be reliant on them I agree / but quality of day to day life is important for me just now - Best wishes to you dear 🙏

Tonkinca profile image
Tonkinca

I asked for a gynae referral before going on HRT as family history of blood clots and I suffer from migraines. He felt transdermal patches would be safe in my case. I put up with dreadful hot flushes for over a year and within a few weeks of starting HRT they were gone.

Shiv14 profile image
Shiv14

I’m on HRT 10 years. I tried all of the suggestions mentioned about before I started with Zero results. I was a walking zombie from lack of sleep. The risk of stroke I think increases from 8 in 1000 to 11 in 1000. So 8 in a 1000 will get a stroke anyway. As far I I was concerned I had a far higher risk of getting multiple other illness due to lack of sleep. I pointed this out to my GP when she suggested I start reducing and she agreed I was probably right. When 🤞 I eventually get passed PMR I will again try reducing but my sleep is vital for my recovery at the moment.

Dizzart profile image
Dizzart

😂🙄😂

petros31 profile image
petros31

As a male, with night sweats and a little weight loss, my concerned GP arranged for me to have a bloodtest to check my paraprotein level, which can indicate a cancer. Thankfully I am at 'low risk', wth a 6- month recheck.

Bridge31 profile image
Bridge31

Unbelievable 🙈 I have had HRT patches for 35 years following an hysterectomy . They stopped the early menopause sweats ( the night rivers were awful ) but they don’t stop the PMR/Pred. sweats .

However I do believe they have protected my bones as my Dexa scan was good for my age.

I sincerely hope you find some helpful solution soon. 🌻

SusanEleven profile image
SusanEleven in reply to Bridge31

I had a hysterectomy for uterine cancer and used a transdermal estrogen patch for 20 years. A cancer specialist told me he was more concerned about the effects of estrogen deprivation at my young age than anything else after my surgery. It was wonderful to stop the terrible sweating. My bone scan the first year after stopping the patch showed a fair drop but my endocrinologist had warned me in advance that would happen.

PMR/Pred sweats have been no fun. I’ve regularly gone out to the porch without a coat in dead of winter for relief

Flutterbies57 profile image
Flutterbies57

U have got to be kidding . I seriously need a Keith Richards sweat band to keep the drips out of my eyes .

Croft9232 profile image
Croft9232

Hi Janet

I can truly sympathise. I too take HRT 1 mg Oestrogen only following a Hysterectomy 12 years ago. Rheumie perfectly happy for me to be on it, in fact comments that my Dexa scan shows excellent bone density for my age and says HRT probably the reason.

Could your Rheumie prescribe it for you at all? Or in his letter to GP ask them to prescribe? I know that any medication he says I need, my GP follows prescription to the letter.

Also I read that HRT is now available OTC but I have no idea of what kind etc or if this has started. It may be something you could explore etc ?

I truly hope something gets resolved as I know how debilitating it all is. Take care

Margaret.

PMRpro profile image
PMRproAmbassador in reply to Croft9232

theguardian.com/society/202...

Not sure how much is absorbed - it is primarily to deal with vaginal problems, dryness etc

Wallysma profile image
Wallysma

you will need a very large can....

Oh my...you can't make this stuff up. Good luck with this. I don't think.people realize how awful it is to live with this. I have temp switches thru the day but nothing like what you have. I even bought this fan thing that wraps around your neck part way and I.keep it charged and nearby and grab it when I feel the heat starting. Since it's like a little a/c it does help. But the dismissive nature of docs.in dealing with this makes me nuts. Take good care.

Nightingales profile image
Nightingales

Amazing! Maybe we could take it to Dragons Den. Full body anti persperant spray instead of spray tan. 🤣 I recently went back on HRT after lots of research. I chose it for bone protection after talking to the Royal Osteoporosis Society nurse. I am 75 and took it for 25 years after total hysterectomy until my GP persuaded me to come off it when all the negative research came out. You may be able to find it in search on here.

singingloud profile image
singingloud

🤦oh my! Strokes can be caused by HRT??? God help you find someone who knows what they are talking about! I’m on HRT and have been since 2000. When I started my Pmr journey I contacted my GYNECOLOGIST and he said to stay on it. And he has PMR himself. He is retired now because of a major heart attack so my physical assistant orders it up for me. I have annual blood test for my hormone levels.

I hope you can find a good physician soon.

Suffererc profile image
Suffererc

expensive rocket science 😂🤣😂🤣

JanetRosslyn profile image
JanetRosslyn

Thank you everyone for your comments and suggestions. Much appreciated. Will act on them in a couple of weeks...

I'm off on holiday to Majorca tomorrow - bit scared as I've not socialised since March 2020, but I'm 'biting the bullet' and just going for it, armed with my hand gel and my Grade 3 masks. I had covid a few months ago and I've had 5 jabs now, so hopefully I'll be okay, fingers crossed. I'm looking forward to resting in the shade by the pool, reading, relaxing , gentle walks and being waited on for a fortnight!

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