I started to write this as a response to Yorkshiregirl's post about her hot sweats - but have decided to start a thread because I'm interested in how many others have had this sort of experience. We almost all have "hot flushes" - and variously blame PMR/GCA or pred or both but what are they like and has there been a difference between with the illness and with pred (if you know any)?
For almost all of the time I have PMR I have had these waves of heat - during the 5 years of "PMR-no pred" I would suddenly feel sweat trickling down my back or under my arms, especially when involved in something significant, a business phone call or trying to get something done urgently. Not necessarily physical activity, just maybe a little bit of stress. On various sorts of corticosteroid I've still had sweats but less of the wetness. I have always been too warm and sticky in the house, even with just PMR - I turned down the heating, husband turned it back up! I wore summer clothes all winter. The stickiness was improved a bit when atrial fibrillation was diagnosed and very well managed medically but I was still too hot - especially at night. Two or 3 years ago I had the door to the balcony open all night although the external blind was lowered, even though it was WAY below freezing (I live halfway up a mountain!).
Then, suddenly this summer I stopped feeling bleugh in high heat - I did 3 weeks in China, walking, climbing steps all over the place in temperatures in the low to mid 30s C, I came home to 34C and revelled in it while all my neighbours were wilting. It's colder now - I'm wearing socks (thank goodness I didn't through them out in the years I couldn't bear to wear them!) and a cardigan (what's that?) and I feel cold out even with my new down coat on. And I'm more aware of the hot waves and sweats. Still get far too warm in shops if I've just been for a walk beforehand.
Through all this the one commonality has been a feeling that I have been punched in the solar plexus just before the hot feeling starts, the harder/longer the punched feeling, the more severe the "flush". Has anyone else had anything like this?
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Yes, I can understand your feeling of being 'punched in the solar plexus' just before the heat comes on. I have been experiencing these hot sweats since reducing down from 7.5mg 2-3 months ago, (currently on 6mg). They are worse at night & leave me feeling weak.
I can go & stand outside & have a hand held fan to try & cool down. They usually last for no longer than 4-5 minutes but are distressing.
I think it could be the GCA still active or maybe the drop in cortisol , I really don't know, (due to see my GP tomorrow) but I am interested to hear of others who have a similar experience.
I wondered if it was the autoimmune activity too - they had near enough gone down to 5mg pred but are back at 4 and I'm trying again to get to 3mg. They are worst for me in the early morning, they wake me so I don't think there is too much overnight.
My head sweats coincided with the GCA symptoms starting. When I'm feeling worse than usual, they seem to be worse, and my head is saturated in seconds. I look like I've been in a tropical rainstorm. It can be with very little physical activity. Eating also seems to trigger it, so I often have a fan blowing on me whilst eating. At work I can dry my hair 3 or 4 times, especially after assisting patients with their wash, it's very embarrassing. Strangely enough I never get night sweats. I am past the menopause and did not suffer sweats then, but this is definately related to GCA and pmr symptoms.
I started my hot flushes pretty soon after I started pred. I would be sitting in a warm room perfectly OK and I would firstly have this feeling round my nose and cheeks like a mass of water was wanting to burst out, then it did! It was the most horrid feeling and I felt one of my worst side effects. It used to happen several times a day. I looked like I had just had a shower most of the time. It has improved although I woke up yesterday morning and it happened.
I've not been on pred long (3 months) but did get sweats pretty soon after starting. Completely different to menopause sweats, which I did get too. Oddest one for me is like a halo running from around the back of my hairline and under my chin. I also get all over sweats and am careful not to wear light coloured clothing when I go out. Also I have reynaulds so am used to having very cold hands and feet but no longer. Now my hands and feet are pretty much hot all the time. I'm not sure if the sweats are less now than at first or whether I've adjusted to them.
Just had another thought my mum always suffered with reynaulds until she got RA and then it went. I read somewhere that reynaulds was a precurser to auto immune disease. ......
I have had hot flushes ever since starting pred 16 years ago, it's more so when on a higher dose, and in the hotter months, mine is usually in the head and it feels like a surge of blood rushing through and then my head sweats, and drips down my neck, I am never cold and forever throwing open the windows, then my husband coming round after me and closing them !! I also cannot stand high summer temperatures any more, not like I use to do.
I like runrig01 come over in a hot sweat when eating but I have put that down to my hiatus hernia and gall bladder, which could be inflamed due to gall stones, so eating could start of the inflammation/sweats ? so I can only assume that my hot sweats are due to inflammation and the Pred.
Well I clearly have been very lucky. Before diagnosis I ran a slight temperature at times but the Pred cured that completely. On 15mg I got sweaty when I was out walking, enough to make my hair wet but this quickly went once I was down to 10mg and also with the onset of winter. On pred I found extremes of temperature difficult to cope with. Now off pred and still find I ache if I get too cold so have a mania about keeping warm. I seem to have escaped the hot flushes which sound debilitating.
Thought that it might he!p to hear of a very different experience.
Especially the bit about extremes of temperature because I also found heat oppressive and I stopped skiing when it was really chilly (-5C and no sun) because my legs got so cold, especially the backs of my thighs which I never had before.
I haven't skied for the last 3 years (for other reasons too) but it was such a surprise this summer to enjoy the warmth in China and when we came back - and an even bigger one now I'm COLD! There are a couple of other things I've noticed which make me wonder if my thyroid is playing up too.
Hi there just been reading about hot sweats I suffer with shopping in and out of shops changes in the tep, I end up with wet clothes wet hair I also find when I eat I get them, I had them before I went on peds they just get worse, I love shopping but do it on the Internet and qvc it's much nicer, I've just reduced my pecs by 5 mg on 15 now started on 30mg in July still get pain when I do anything even just cooking the tea, I am really down and fed up with it all, I get 60percent pain relief with peds going to see how I get on at 15mg if no better going to ask to see a rumie, always tired too, I always try to carry on as normal as possible but I am finding it really hard at the moment would love advice to help please.
Never mind the "carrying on as normal" - you have to do your part in managing this rotten disease and that means pacing and resting between doing things to avoid your muscles hurting afterwards. The underlying autoimmune disorder is still active - the pred does nothing for that.
I started colouring in to take my mind off things, and sure enough one would think I was doing a workout....as soon as I started concentrating my upper body would drench me with precipitation😷😤
I've been on Pred for a good long time now and hot flushes and sweating sessions have always been one of my problems. Over the years I've found that, like many others, I can't take extreme temperatures, it's almost always too hot indoors (shopping in the winter months can be a nightmare) and I can sweat at the drop of a hot cup of tea. I can also sweat profusely for no obvious cause at all. I suppose I've become accustomed to it all and, being one of life's mysteries, it's not something I've really given two thoughts to for some time - it comes, it goes, it does it's own thing.
However, the incidences when there has been no obvious trigger have been fewer during the last couple of years and I was rather hoping that they were on their way out (ha ha) when I had a 'light bulb' moment while in hospital this year.
I had a hip replacement (which was and is brilliant) but on the second day I could feel things gathering momentum so I settled down for an early night. It wasn't overheated in the ward and I knew that if I could cool off a little I would be ok. Fine. Dropped off, no problem. Next thing I knew it was total pandemonium and for a few minutes I thought I was having a nightmare, my bed was being shifted around, I was having all kinds of stuff plonked on me (when I woke up properly I was attached to 4 different machines) taken down to xray in the middle of the night (twice). Yes, I was aware that I was hot and sweaty but I just wanted them all to go away and leave me alone to deal with something I'd coped with many, many times before.
It was 48 hours before I could find someone to tell me what the hell was going on. What I didn't know was that during those sweats my temperature was going off the scale - it just never occurred to me that I was running a FEVER at those times. Dim or what? Apparently I'd frightened the socks off them and they made me stay in jail - I mean hospital for twice the normal time. I think they were afraid I'd melt if they let me out.
A very long post to say not very much really, but does anyone else find they are feverish at these times?
I have PMR and GCA and I have often taken my temperature during a sweat out of curiosity. It was always frustratingly normal leaving me to wonder if I was imagining it. Sometimes we just can't figure out this condition, can we?
Hi friends,
I've been on prednisone for PMR for the past four months, now at 20 mg and tapering. The sweats seemed to start with the medication and is now a daily thing- after showering and getting dressed; after unloading the dishwasher; after folding clothes etc. The smallest exertion brings it on requiring the use of a wash cloth for a while before it subsides. And when I try to wash the car or anything more physical, the sweats are accompanied by bright red cheeks. You'd think I just ran a 26 mile marathon. Warm temperatures are also uncomfortable and will immediately bring on the sweats- like a warm doctor'so office waiting room!!! Guess it's just one of the side effects we get to experience. Hope it subsides as my dosage gets lower.
I have always been someone who has felt the cold ( I am slim & small) and never got hot flushes during the menopause. I am now 64 and I was diagnosed with PMR in April this year ( at 63 ) and I had been experiencing daily low grade fever episodes which felt like flu. The Pred fixed the low grade fever but I started with hot flushes and mild sweating episodes. This winter I have needed to wear light clothing layers to work which is very unusual for me as I have always needed to wear warm clothing ( I live in NZ so we are now into spring) . The flushes and sweats appear unpredictable for me although I seem to experience episodes more frequently after moderate to mild exertion. I am not looking forward to the hot NZ summer ahead. I am reducing using the dead slow and stop method and the frequency of episodes have lessened somewhat on the lower doses although I still have mild sweats. I am currently attempting to reduce to 7 mg .
This all sounds very familiar. Had terrible night and day sweats during the menopause. They thankfully subsided after a while. Started on 15mg Over a year ago and thought the old menopause symptoms were returning. No night sweats but generally when in restaurants(most embarrassing) or after walking. Could it be that alcohol played a part ?? I'm gradually reducing and now on 6mg and the sweats are less frequent and less severe.
It's good to know that others have the same side effects. I guess it is the pred as my sweats weren't happening at the onset of PMR.
By the way does anyone have slightly blurry vision. I have had my eyes checked and they could find no problems. ?
That can be a side-effect of pred. My sight went a bit strange just with PMR mind! I have had the same computer specs the entire 11 years - they just sit at different positions on my nose as appropriate!
Blurry vision can be a symptom of GCA. Do pay attention to any of the other possible symptoms if you experience them: headaches, scalp tenderness, pain behind the ears and in the jaw when chewing. Ask your rheumatologist for an immediate appointment if some of these occur.
Thank you for that. I've had a recent scare. 3 visits to the docs, twice to A and E and a visit to the opticians. I thought I had GCA as I had headaches and blurry vision. It turned out to be nothing but sitting in a bad position whilst reading my IPad.
My vision is ok now but I still have mild floaters. I think this maybe a
I've had a large floater since PMR started - it improved with higher pred (10-15mg), returned a bit as I reduced and - now you mention it - isn't there at present! I wonder if that is good news...
I started on 15 mg Pred in January and am now on 9.5 mg. I found the hot flushes started fairly soon after starting the Pred. For quite some time it affected my upper body and as others have said going into hot shops sent my sweating going. My hairline at the back of my neck was soaking. I tried to wear cotton and loose clothing in the summer.
As I have reduced the medication it has become less of a problem. It still happens but either I have become used to it or the cooler weather is helping. Who knows, but I will monitor it now, with more interest.
I sit next to our open patio doors and can get some cooler air, luckily my husband doesn't feel the cold. But he is the first to get up and shut the door! It used to be me.
On the plus side, I haven't shopped as much, eaten more salads (less cooking) and we have just had a £90 rebate on our electricity bill.
Think I will send some as a donation to PMRGCA as you are such a help to us all. I certainly appreciate all your advice.
Morning all... been browsing through this thread and although on long-term steroid use and high, never been below 8mg, I'm obviously lucky not to have had any hot flushes, which I'm grateful for, bad enough with the other side effects. So no suggestions how to cope, all I can say is that for me it's difficult to tolerate heat when temperatures rise above 25 degrees (which isn't often in UK - lol). Good luck to all who have this miserable side effect.
Like you I have had these sweats and hot flushes for almost 5 years (put down to the menopause) before diagnosis of PRM/GCA! Diagnosed in June, still struggling, window open at night, leaving shops when it gets too much, sitting on the sofa and whew, I just break out. Before this happens, my stomach starts rolling and I feel really nauseous - not painful just unpleasant.
I am not sure if the preds has made this worse.... I tremble and have palpitations with a feeling of anxiety, which I don't believe helps the situation. I took a diuretic for a while because my ankles were so swollen, they definitely seem to make me sweat more.
So similar to your symptoms I guess, but we all seem to be a little individual with our illness.
Just as menopause was over PMR hit and sweats at least once a night .... and during the day at any slight controversial moment. Husband has lost so much weight and unable to do much so house temperature set at unbearable level so wear very little at home. But just noticed that not had my reynaulds for a while so every cloud and all that!
Before it starts with me I feel like my hips are being dragged towards the ground, my weak sacroiliac joint screams then profuse perspiring of upper body and head.....soaked hair & clothes.....turn on Air Conditioner them my feet feel like iceblocks, I have all symptoms of infection including ringing in head😨 I'm untreated except for Tegratol as my spine is too damaged and Prednisone not an option😭😭 Very unpleasant.
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