any suggestions on how I can manage and reduce the Perspiration running off my Face like Rain please ? My Glasses steaming up and Sweat rashes too 🙄 it’s really making me Miserable -
Prednisolone 10 mg daily ,
I’m constantly wiping my Face and Showering !
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RoomsonFire
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🙏 Thanks for your response and interest in the Sweating problem Rachel ❤️ It’s a horrible thing , Antisocial too ! Peeps will want the Heating on soon 😂 !
I'm sorry if I've missed something in another post but have you had a thyroid blood test? I had symptoms almost as bad as you have before a hyperthyroidism diagnosis. I really hope you get some relief from it soon.
side effects of pred include-irritability. mood changes. noisy, rattling breathing. numbness or tingling in the arms or legs. pounding in the ears. shortness of breath. swelling of the fingers, hands, feet, but not usually heat intolerance and perspiration. Are you taking allergy or blood pressure medications?
Thanks for your prompt reply 🙏 Taking statins but BP is ok , I do need to take deep Breaths more than pre Diagnosis , I’ve got the Weight gain , swollen fingers - I have low Mood days when I feel Exhausted and Frustration from the whole range of symptoms ! Like everyone else I guess 🥰
"but not usually heat intolerance and perspiration."
Not sure where you got that from, but I suspect there are plenty here who would disagree! If you google corticosteroids and sweats you will find loads of links mentioning sweats and night sweats.
And both are found in association with PMR and GCA, more GCA than PMR it is said but I know plenty of patients with PMR who can't tolerate heat. Me included.
I feel I must comment on your response as although I don't at all doubt you've experienced the side effects you've mentioned, I have not experienced any of those myself and not even heard of some of them.
I've been on Prednisolone for 3yrs and have experienced my own differing side effects, including extreme fatigue, recurrent head pains and definitely many 'hot flushes' that have frequently been accompanied by sweating.......all of which do seem to be experienced by many people taking steroids.
Because we're all individuals with different combinations of medication and differing life circumstances, no two people will experience the same side effects and the list of possibilities is most definitely not finite.
I feel that any change from the 'norm' that can not reliably be attributed to the condition, can probably be attributed to being a side effect of pred......and just as none of us will experience every side effect thats formally listed, most of us will also experience side effects that aren't formally listed.
And that adds to the confusion for the medical proffession. I went through a stage of putting everything down to preds and then found out I was feeling so lousy because my liver, kidneys and spleen all had a problem at once. Blood tests are very important on this journey. I tend to sweat mainly the back of my head. I go into the shops with dry hair and come out looking like I have been in the pool.
Yes, I agree that regular blood tests are a necessity, particularly when on steroids. That's why I have a full battery of blood tests every 6mths which include liver & kidney function amongst many others.
It sounds like your GP is doing a good job. I have a blood test once a year where they don’t even check on actual HDL/ LDL cholesterol levels. How can we be treated so differently even though we have the same condition?
It does seem very hit & miss and quite unfair too.
I see the rheumatologist every 6mths and so I'm required to take blood test results each time. I am also quite 'vocal' in expressing what I'd like to happen and thanks to the advice received here, pretty good at arguing and justifying those points!
It is very reassuring when I see all my results are withinn normal parameters and it motivates me to continue educating myself about my condition so I can continue to remain as healthy as possible whilst on steroids.
You can still do that though without all the blood tests.
I do understand that but they still have a duty of care to regularly monitor anyone on steroids... particularly within the areas steroids are known to cause problems, so, blood tests to monitor
- ESR & CRP
- blood glucose levels
- blood cholesterol
- bone profile
- liver function
- kidney function
- calcium level (& Vit.D)
- full blood count
All these should be done routinely in an ideal world. There are other blood tests I have as well as these, but only because I've been able to justify them and their efficacy in helping to hilight any potential damage the steroids may be doing.
what are the guidelines for being put under the care of a rheumatologist? It looks like you get so much more detailed analysis of your overall condition by being seen by a rheumy.
My GP surgery has never suggested a rheumy, but they do not do detailed blood tests or even call me about reviews.
You can ask to be referred privately and the GP should then make the necessary arrangements.
However, unless you have private medical cover, this could turn out to be an expensive option.
GP's are not obliged to refer you through the NHS system unless they feel it's appropriate, but you have a legal right to request areferral if you feel that progress is slow or you're not acquiring the answers, treatment or care to affect any significant improvement.
If you can put a good case forward then you should get referred, but there's no guarantee unfortunately.
I asked to be referred to a specialist as I knew PMR was a little-known condition (my father had it) and as such specialist care would probably facilitate a more knowledgeable and successful care or management regime.
It is a side effect of pred. Really horrible. I used to tell people I had been swimming. People have tried sweat bands like tennis players use. My rheumatologist laughed when I mentioned it to him!
No not funny … it’s horrid! I have it too… bit better today. I have lots of bottles like soldiers in the fridge and keep drinking the cool water - it does help a bit. 😅x
Thanks for your reply and supporting comments 🙏 You have had this Blight a unfair while ! I have tried Cold drinks and Cold towels - wish there was an Antidote , like an Antihistamine type remedy ! 🥰
I just read a post on Facebook. A friend was complaining about feeling boiling hot and dripping with sweat in this very humid period of weather. About 30 people jumped on this saying they were also tormented and dripping. I doubt that they all have PMR. You might feel a bit better when autumn arrives?
Thank you Sea Cat 🙏😻 Well it has been really bad through the Summer .. but I was nearly the same during the Winter unfortunately- Other Peeps in the House Will want the Wood Burner on soon ! Dreading that ! Best wishes to all Everyone else Melting 🥰
I understand that...my husband loves our woodburner and in winter I'm just 'blathered'.
I cool down quite effectively by either running the inside of my wrists under the cold water tap or standing in the bath and running the cold shower over my feet and lower legs. Bliss.
Have you tried a hot water bottle filled with a jug of cold water thats been chilled in the fridge? I also put some crushed ice in too. Definitely helps.
Thank you 🙏 Mrs N , I was hoping someone knew of a Treatment for these Sweats which are All Year round for me - Like an Antidote 😂 I have Posted and searched a couple of times actually, In case someone offered a Herbal or similar treatment , like something that works for Menopausal sweating working for us too ? 10 mg Prednisolone currently, due for review with Rhuemy in November 🙏
I used to ‘run cold’ but recently have developed hot flushes similar to menopause. It is mainly in my face and head (GCA since Feb 22) but my body core also gets hot- it is a sudden thing, then wears off. I don’t sweat, just feel feally hot and face burns. Currently on 18mg pred. I bought a hand held manual fan to fan over my face which really helps. I too read that it is a pred side effect. Not tolerated the hot weather this year- very unusual for me.
We’ve fitted a ceiling fan both downstairs and in the bedroom. Absolute heaven especially on a hot sticky night when you can’t sleep. So quiet as well. Hope you get some relief!
Thank you Temeraire 🙏 We have Fans , I’ve used them a lot , but my Husband doesn’t like them - he’s Noise sensitive - I think we will need Air conditioning in the UK as our Summers get hotter ! But they will be too expensive to have on .. 😢 Best Wishes to you 🙏
Depending on your dwelling, look into having a heat pump - which we actually find as useful for cooling in the summer as heating in the winter. The initial cost may be expensive but the savings afterwards more than make up for that. There may even be government subsidies to help cover the purchase as every heat pump works towards lowering fossil fuel use. We could not tolerate living where we do if we had not been able to have a heat pump installed before we agreed to buy the property because the sun which heats the place brilliantly in the winter makes it far too hot in the summer. (We had a ducted heat pump in our former home, a single family dwelling, which replaced an oil furnace, we had an electrical unit installed as automatic back up for the very coldest days. The savings from not needing to buy fuel were incredible. Now we are in a multi-unit building with electric baseboard heat. The heat pump replaces the electric heat, and also provides us with air conditioning, through a ductless unit which sits at one end of our balcony. )
thanks we’re taking time to describe your Heat Pump solution , I had no knowledge about them , I’m in the UK - Until the last 5 years I thought our Weather here was fairly Kind - Global warming everywhere causing freak high Summers now -
I did google heat pumps uk and there were loads of possibilities. But try to start with government information and make sure if there are any subsidies you get whatever you're eligible for. Internationally the UK is noted for doing rather well with meeting its (unfortunately still inadequate) carbon reduction targets , which my country, Canada, has missed every single year .
Thank you PMR Pro for researching a quieter Fan option .. I have sat with my Feet in Ice Water on Bad days - But it seems I’m in good Company with this problem 🥰
Living half way up a mountain has its positives! We are high enough for nights to be OK - we've had one or two nights where it didn't get below about 17/18C early doors. The big problem is getting to sleep when it has been hot right into the evening. But closing the doors and putting the outside blinds down before the sun gets round will keep the bedroom not too bad. I have a n air filter - does double duty as a fan and has a night setting which is enough to keep air circulating.
Have you tried one of those gel-filled neckerchiefs? You can buy them or if so inclined make one. You soak it in water before putting around your neck, and as the moisture evaporates it really does help to keep you cool.
I like the idea of a heat pump but I think they’re pretty expensive and don’t always suit how our houses are built? Or am I thinking of a ground source pump? Time for bed I think…..! 😴xx
The ones we use here get the heat from the air. Yes, even in the middle of winter! Geothermal much more expensive, though it would also heat your water, but think they are more practical for large public buildings.
I wouldn't be surprised. All kinds of supply chain problems, and anything energy-saving related is much in demand globally. My son's new vehicle was vandalised and considered a write-off. He thought he'd seize the opportunity to add something to the insurance payout for a replacement and get the electric (or hybrid?) version, but none were available in Canada!
Just talking about everyone rushing out to get wood burning stoves here because it is cheaper (they think). But wood has also doubled in price already - all energy will cost more but then it is supply and demand. I have a wood stove and I will get some supplies - but I couldn't cope with using wood all the time, couldn't carry it.
Wood stoves were all the thing here a few years ago, but seem to have been falling out of favour. Many people (although apparently not our regional government) are getting really worried about the decimation of our forests.
Oh, and the extra socks - I seem to remember before the widespread use of central heating in the UK people tended to go to bed early with a hotwater bottles to keep warm! At least this is what I observed as a teenager visiting elderly relatives.
Dunno we went to bed early - my bedroom was as cold as outside, no electric up there! They got up early to get to work - so went to bed early. We had stone hot water bottles too.
Back to London smogs since they aren't tight enough about emissions. We have loads of wood here - clearing out the forests is important and when we've had the storms we had problems using up the wood,
I had this, like I’d just come out of the shower or swimming pool every couple of hours. It started shortly after I started on pred, and gradually reduced as I managed to taper. At its worst I was sitting on beach towels in the house to keep fabric furniture dry, and had them on the bed too. I’m fortunate to be retired so I was able to pad around the house in beach wrap type clothes and dry off each time to try to keep my skin from developing sores. If it’s any consolation, it does pass, I’m currently taking 1.5mg daily and experiencing only very mild ‘warm’ flushes about 2-4 times each 24 hours.
Thanks for your reply 👏🏻 So in your case you believe it’s the Pred causing the Sweating not the PMR - So even more Motivated to reduce my dosage - but I don’t think the Monster 👹 will allow me currently!
I think so. I’d had PMR for about 3 months (it crept up on me over time) before I saw my GP, then it took 2-3 weeks to get all the various tests done to get a diagnosis and start on pred. I’d no sweats (other than related to the weather here in Queensland!) until I’d been on pred for a few weeks, and they’ve gradually reduced as I tapered down. Good luck!
I get so hot as soon as i get into bed. I can be absolutely fine fully clothed in the same room, but as soon as i get into bed i feel so hot i end up going to sleep on top of the duvet. During the night i cool down and have to get under the covers again. I have a 2 tog duvet. Hubby has a fleece on his side!
Sounds like our house was!!! Started when OH had cancer first time round - the result was a new bed with 2 single mattresses and 2 single duvets. Brilliant!
I'm close to considering that bed option !! My OH is always cold since his cancer treatment , in the lounge he's wrapped up in a slanket with the room at 25 degrees but still says he's cold and I'm down to vest and shorts fan on and still sweating!!! It's as though we're from different planets🤣
Yup - where I was last summer! He had a couple of sessions in hospital and i celebrated by turning the heating off - I've spent all this summer with all the doors to the balcony wide open day and night - super!! He sat in his room with the radiator on full blast and a little electric radiator at times too. Mercifully it was the smallest of the 3 rooms and he slept there too after his spinal fracture so he didn't disturb me but he moaned every time he had to emerge from it! I had to take clothes off to go into to do caring duties, it was so hot it made me feel sick.
I could have written your post. I am constantly dripping wet with sweat. It is miserable and so embarrassing. Only wish it would cause weight reduction!!!
I have a theory that carbs make it worse. I am pretty good with having cut simple carbs from my diet. When I was on Pred (just TCZ now for GCA and PMR) I noticed that if I carb “binged” (which I would do monthly at my book club!) I could feel the heat flash and would perspire profusely. May something to do with symptoms of a spiking blood sugar? Alcohol produced symptoms even more so!
Yes I've found alcohol completely intolerable even just a tiny amount! So switched to alcohol free versions to no avail !! The sugar content is ridiculous and brings on the sweats as though I've run a marathon ! (Which by the way I could do in my younger healthier days) so back to sugar free drinks and lower carbs and enjoying the things I can still do and ignoring the comments about being boring because I don't drink ! it's become too tiresome to explain why to people, so I just tell them I don't enjoy it 🙃🤣
yes that’s interesting as it is worse after eating sometimes , but can be bad before I eat or do very much first thing in the morning too and in the Night ! Phew ! It’s a Blooming Nightmare- I’ve bought one of those Ice Cold Neck scarfs to see if that gives some relief 🙏
I feel as if my body thermostat was severely affected by PMR/GCA and worsened by pred and possibly other medication which was added on in the early weeks (30 months ago now). Although I'm tapering the prednisolone very slowly and now on 5mg daily, this hot and humid summer has seemed unbearable and even today I was suddenly cold and before I'd got out of the room to find a cardi I was suffering a "hot flush", which can make me feel quite unwell albeit fairly briefly.
I think those not in our community do not understand the many and various symptoms and side effects we suffer on a daily basis - I include the majority of the medical profession in that generalisation!
We have to keep remembering - things can only get better - hopefully.
hello Liz , Thanks for your reply, Like you I have the Weight gain issue too , 15 mg of Pred 18 months ago , now taking 10 mg - Some Pain and Stiffness , but resisting going up .. and Methotrexate option - Gained 2 Stone plus !Admit I had an Ice cream craving ! 🙄 Best wishes 🙏
Cut your cards and you could lose that weight, even while still on pred. I managed to get rid of 35lbs like that. Need to have another go - been comfort eating icecream too over the last 6 months!!! Obly a couple of kilos but even so, I need to lose more than that,
Losing weight would be sooo good for me - I’ve always gone up and down , 10 stone to 14 ! Up at the dreadfull limit weight now 🙄 ! I’m Vegetarian 45 years .. which sounds ok .. but Carbs are high in Pulses , Cheese , Bread , Etc.. my staples - Veggies are great but Bread is my Nemesis - I will get hold of my Neck Scruff and onto the Green Smoothies any day now 🙏
I hear you! As Pmr2011 says, carbs make me worse. Just wondered if you go unbelievably hot with any form of stress or worry. I feel like im going to combust with heat sometimes if something triggers a worry? I am known as fan lady...cant do anywhere without my hand fan or neck fan!
yes ! Stress definitely puts me in a Swoon - Our Boiler Sprung a Leak recently and my PMR symptoms Sprung a response too ! 🙏 Headache too - Thanks for your reply ❤️
yes...so annoying...but how good is it to know others here understand ...I honestly would have been sick with worry over some things had I not read this forum!! All the very best anyway 🌻
Just a thought, on 6mgs, 5years into PMR and experiencing sweats, head mainly. Dog cooling blanket/ sheet, very cheap from B&Mor HomeBargains!! Works for a while ❄️🧊❄️🧊
Definitely sympathise. Know menopausal women who recommended wearing a neck fan (Amazon purchase) that does help keep me cooler. Hope you find something to help.
apart from the neck sweats.. see above .. reply to initial post… not much mention of throbbing boiling hot feet and knees.. mainly when lying down or sitting in same position too long! ( as in act one at Royal opera house last night!!!)I should be so lucky! Couldn’t manage act 2.. complimentary tickets so very lucky!
So I gave to assume my condition of throbbing hot is not a pred fault!!! They call it neuropathy.. but I was hoping it would be better as I reduced! Today on 8.5! Very dizzy and sweaty! First day from 9.0 Courage everyone! Said with a french accent!!!!
hi Rooms on fire! I have no idea how to stop the running sweating face etc as I suffered from it very much, in fact on a couple of occasions I was totally blind and stinging water in my eyes. Very frightening! The only good consolation was that by the time I had reduced to 6mg it had all stopped. I wish you luck and keep strong.
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