Thermostat gone ??

[Devoid]

Hi does anyone else have huge fluctuations in how hot/ cold they feel, without actually running a temperature?? I am experiencing a feeling of very hot head particularly at night but then at other times if I get even slightly cold I feel very uncomfortable and can’t get warm easily.

[Marilyn1959]

Ditto. Been like it for past couple of months. Have said to OH that I seem to be having problems 'regulating' the body temperature at present, but don't feel 'fluey'. Will be interested in responses from others.

[MrsNails]

Unfortunately Yes, l’ve just swopped a cotton sweater for a cotton T-Shirt & my wig’s on the chair!

When l first became ill & started showing symptoms of PMR l was perpetually cold 🥶 l wore so many layers & l was never warm.

Later on in my ‘journey’ l found l would start to perspire/sweat, it was always around my neck & head, under my neck, in the flexes of my elbows & like a bracelet on my wrists, I always described it as l felt my body was searching for Cortisol ie l didn’t have enough Prednisolone for me to function.

There is a complex system between the Adrenal Glands, the Pituitary Glands & the Hypothalamus, the HPA Axsis, l will look up a link that explains it & add to this post.

There’s a lot of us who suffer from it but for me it’s definitely when l’m on too low a dose of Prednisolone but l’m not sure it’s the same for everyone. This dose not happen so much now as l’m in a Steroid Sparer (MTX) but it still does & l find it exhausting! 🥵

MrsN

This is a link from Wikipedia (l know, I know) but it’s not too bad, it’s a complex subject & PMRPro will probably send you a better link, l used to have something fairly straightforward but can’t find it at the moment.

en.m.wikipedia.org/wiki/Hyp...

This is a fairly straightforward explanation

integrativepro.com/Resource...

[Devoid in reply to MrsNails]

Makes interesting reading, especially as the doctor I had my phone consultation with insisted that reducing the steroids slowly prevented any adrenal function problems?????!

[MrsNails in reply to Devoid]

That’s the plan but sometimes the Adrenal Glands don’t get the Memo! 😉

[PMRpro Ambassador in reply to Devoid]

That is the theory. Practice may turn out a bit different!

[bunnymom in reply to Devoid]

My Rhumey said the same. Ha to that.

[PMRpro Ambassador]

It is something a lot of people comment on. I was always far too warm but at somepoint post starting pred I had to start wearing socks in winter again because all of a sudden I was cold! Now I am always warm but not sure if it is me or His Nibbs requiring the heating on so high!

[tangocharlie]

Many people mention this problem but I don't think I experienced it until having problems with my adrenal glands - I just could not get warm one minute but then sometimes wake up in a hot sweat. Could you be in that position - what dose are you on?

[Devoid in reply to tangocharlie]

Yes I could,I’m on 4mg steroids, 10 mg methotrexate and weekly Tzc injection, the hot is happening regularly but the cold less frequently but it’s awful just can’t get warm and feel odd

[tangocharlie in reply to Devoid]

Report is to your rheumatologist too though it might be connected with the other things you're on

[SheffieldJane]

Yes in the early days of PMR. In your shoes though, I would wonder about side effects and which medication might be causing this. Am I right in thinking that you take Pred. Methotrexate, and Tocilizumab?

Thermostat gone is a perfect description. I think that I also got this symptom with Graves Disease ( thyroid disorder). In my case it goes away again. I have used old fashioned hot water bottles and a bedside fan to try and regulate it.

[Devoid in reply to SheffieldJane]

Yes I’m on 4mg pred 10 mg weekly of methotrexate and weekly TCZ injection. The hot is bearable but the cold comes with a very odd feeling that I can’t describe

[Viv54]

I can tell you that is the Pred, its my second time of taking it and each time has been like i have a built in boiler ! It always starts at my head and most times spreads down my body. This time around not to bad as im on 15mgs not 20mgs.As and example we live on the coast and yesterday was dismal windy and chilly, i meet up with my family for a walk, they had coats macs on etc i had on a T SHIRT ! So my advice is wear something that you feel cool in and wrap up when your cold , but only lightly. Hope this helps. Good luck.

[Devoid in reply to Viv54]

Hi I think if it was pred I would have had it at higher dose, spent some time on 40 mg. I’m not hot all over mainly from chest up and not all the time, the coldness is more worrying as it comes with a really odd feeling and no amount of layers makes any difference.When it’s passed I quite often go overly hot in the head and shoulders

[Viv54 in reply to Devoid]

I forgot to say, I keep a bottle of Lavender cologne and cotton pads next to my bed, so when I feel my head starting to get hot , even though I'm lying still ! I dab some on , lovely and cooling 😊

[Rache]

Yes, I’ve had overheating problems since starting Pred. No difference now I’ve reduced to 9mg. Unpleasant head sweats after any exertion however slight. I keep fans handy, in the kitchen when I’m cooking for instance. Not often cold, though.

[S4ndy]

My little usb personal fan is my best friend. I get really hot, mostly head sweats. I carry a traditional Chinese hand fan in my handbag which I whip out if I am out. Gets a few raised eyebrows but cools me down.

These days seems everyone is taking my temperature before letting me in, yesterday it was dentist. Luckily, the head sweat didn't start until after my temperature was taken I find people just assume I am going through the menopause! Cotton or bamboo clothing is my go to but I still get very hot!

[Suffererc]

Yes

[Visby]

Yes I get this as well I am on 5mg with no tapering below I stay on this dose indefinitely I up the dose when I need too

[Suet3942]

Yes my thermostat is faulty as well. I am currently on 6m pred and 17,5mx. I find when I take my morning dose of pred I get very hot, a bit shaky and have to sit down. Other times it comes in waves. I don’t perspire I just get hot, especially in bed.

[Teekay2]

Occaisional hot flushes on TCZ and down to 7mgms pred. When I try to reduce even by 1/2 mgm I get discomfort on side of face.

[misha453]

I have had trouble regulating body temperature since I was first diagnosed with PMR. I was primarily too hot and also had a lot of sweating for now reason. I am now on TCZ and 1 mg prednisone and the temperature issues are not as bad but I am still very sensitive to temperature and I use both cold packs and heat packs to stay more comfortable.