Hot flushes and sweats

[Sallyaches]

Has anyone else had a bad time on prednisilone with hot sweats. It is waking me up regularly at 3am and I feel like I am in a heat wave. I am taking 15mg of prednisilone which is reducing the aches rather than curing them. On a positive note I don't feel like I have flu anymore

[PMRpro Ambassador]

Let's clear up one misapprehension right away: pred doesn't CURE anything in PMR. It is to reduce the inflammation caused by an underlying autoimmune disorder which causes your immune system to attack your body by mistake. The damage to the tissues leads to inflammation - inflamed tissues hurt. The pred probably also improves the blood flow to the muscles which had been reduced due to the blood vessel walls being swollen. If your symptoms have improved globally in a short time by about 70% on the 15mg pred, then it is most likely PMR. If they haven't - then the diagnosis needs querying or maybe you need to try 20mg. But anything above that is a gift I'm afraid - many people are never pain-free with PMR, on or off pred. On the other hand, bursitis takes much longer to improve, sometimes months.

The hot sweats are a common side effect of pred. On the other hand, PMR often comes with hot sweats - I had sweats during the 5 years I had PMR with no pred. I had sweats for a few years while on various sorts of pred, they improved when I was switched to another sort of pred but are returning at very low doses (4mg), possibly because the cause of the PMR hasn't burned out but the dose is enough to manage most of the problems.

[Sallyaches in reply to PMRpro]

Thanks for that I guess I didn't chose my words too carefully. I think I feel about half better from the pain point of view. This is all a new experience , I was on 20mg briefly but could not cope with the insomnia and when I did get to sleep really vivid nightmares. I am sure even 15mg is making me more emotional but I think some of that is just trying to come to terms with everything

Best wishes

[Celtic PMRGCAuk volunteer in reply to Sallyaches]

Sally, yes the steroids can mess with our emotions and our sleep. I started on 40mgs so I understand exactly where you are coming from! If you drink coffee, then cutting that either down or out can help, also alcohol - you may also find relief from the sweating too. I even changed over to decaf tea. I also found a short walk in the late afternoon helpful. Just try and catnap during the day to make up for the lost sleep at night. As for you "trying to come to terms with it", it does take some doing to get our heads around it at first, but it does get easier, I promise.

[PMRpro Ambassador in reply to Sallyaches]

Maybe I didn't either! It is just that so many doctors leave their patients with PMR believing they will be back to normal as soon as they take pred. I'm afraid not!

It's a shame you couldn't cope with 20mg - it would have dealt with the existing inflammation faster but if you are patient then the 15mg will do the job. The worst of my muscle stiffness was gone in hours - but the hip bursitis and the synovitis in my hands took a few months to go altogether - tendons etc don't have a blood supply directly to them but are bathed in synovial fluid which gets some pred into it and slowly the inflammation subsides there too. Local cortisone injections are faster - but I would have needed shots all over the place!

As Celtic says - steroids do mess with emotions (but so does PMR) and being diagnosed with a chronic illness and suddenly being on medication of any sort requires a massive mindset-shift. It will improve, especially as you learn to manage it all better. Being ill takes a lot of practice! Rest as much as you can at present, short walks in the fresh air will help - even just round the garden several times a day is easier and just as good as a half hour walk in one go.

[venezia1]

Hi - I find that the worst sweats come a bit earlier for me - anytime from 1.30a.m. onwards. I get up and have a cup of warm milk and take part of my pred dose, which calms it down quickly, then take the rest when I get up in the morning. It helps me to split it like this.

[Lisa630]

Oh I suffered terribly with the sweats, everyone thought I had gone Barmy walking around in T shirts in the middle if winter, I was on 40mg and I woke every night at exactly 3am (how bizarre that you wake at the same time)

I tried all sorts only drank decaf tea, wasn't drinking alcohol, wore very light clothing nothing worked. . I found eating was terrible it made me sweat so much, I used to feel faint.

I'm now on 10mg and the sweats have got better, but as soon as I do anything like walk up the stairs I feel like I'm boiling.

So whilst I can offer you any real help I thought it might be if some comfort to know there is another hot person out there. . .

Hope things settle a bit for you, if you find any new tactics let me know and if I find any solutions I'll let you know

Take care Lisa x

[Asbeck in reply to Lisa630]

I wonder about the 3:00 AM time. I believe that the Pred "wears off" after a number of hours. It's something like 17 hours. So at 19 or 20, I wonder if the waking up is from a lack of the surge from the last dose. PMRpro talked about taking the Pred at 2:00 AM. I tried it. This is a pain in the neck. (I take a stomach coater at 1:00 AM...... But at least after the dose--I sleep. I admit to drinking wine (12 oz.--probably too much.) It puts me to sleep for some period of time in the evening before the dose. The two "sleeps" taken together = more sleep than I get when waiting until morning to take the Pred. I used to wake up at 3:00 AM with arterial pain in my head and the sides of my nose and my right calf. Now I think that these pains are usually somewhat masked by the wine. (Although sometimes from midnight to 2:30 AM is a bad time.) Then in the morning I do seem to feel much better, more agile, and more alert than I do when I wake up, take the Pred and try to get going. It might be worth a try (without the wine).

[Runrig01]

I suffered terribly with head sweats, but always during the day. They disappeared when I was on Azathioprine. Recently came off Azathioprine and head sweats came back with a vengeance. I believe my sweats are part of the illness and the Azathioprine was doing a good job in hindsight. Started back on them a week ago.

PMRPRO I seen MaxFax today who confirm tongue symptoms are tongue claudicatIon, nice to be believed

[PMRpro Ambassador in reply to Runrig01]

About time too!!!!! Shame you hadn't been sent to maxfax sooner - wonder what that rheumy will say to that?

[369yds]

I have had hot sweats since I ve been on PRED. People tried to say it was hot flushes to do with the change of life, I just know it's not that kind of flush I get . I get very hot around the head and neck but I'm cold to touch but sweat and very clammy . It's brought on if I'm in a tizz or in a hot environment and yes it wakes me up in the night along with the aches . Because I'm a women of a certain age it's classed as hormonal . There is no way of me proving it's not but I'm convinced it's medication as since I'm reducing so has the intensity of the sweats . Dose any one else agree with my experiances ?

[Dianabee]

Hi all good to read your helpful comments. I also suffer badly with overheating, I find a fine mist cold water spray is very refreshing ( picked mine up from one of the £ shops)