June

[Tasker2]

Hi this the first Time I have posted anything on here . Reading all the posts have really help me understand more  about  pma I was diagnosed 2years ago with it ,have been on preds since ,I am now on 4 mil a day  but the sweating I am getting is awful is  that  normal  I would be grateful for any advice how other people cope  thanks in advance 

[Celtic PMRGCAuk volunteer]

Tasker, the sweating you are experiencing can be a side effect of both the inflammation and the steroids, although it is something that usually improves as we get to the lower doses.  If it is something that has only recently occurred since being at 4mg, then that may be a sign that you still have some inflammation lurking and a return to your previous dose might solve the problem.  Or it could simply mean that all your hormones are trying to adjust again having been aggravated by the higher dose steroids.  Strangely, I used to find that the sweating would often return immediately on reducing to a new dose but gradually disappear again.  Weirdly, occasionally it would also happen during or immediately following a meal. 

As for how to cope with such sweats, in my case it mainly used to affect my head and I could often be found sitting at the computer with either a towel wrapped around my neck to catch the drips or an towelling band around my head a la Wimbledon! 

[Tasker2 in reply to Celtic]

Thank you for your reply I do put small bottles of water in the freezer wrap hem in a towel and hold them on the back of my neck  .I also take one to bed with me to put my feet on has my feet burn  I must be the only person to take a cold bottle to bed ha ha 

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

Hi Celtic,

Funny you should say you had problems after meals. I'm now down to 1.5mg, and the only time I seem to be affected , not by sweating, but by fatigue is directly after a meal, more likely a small one than a large one. 

I've had this for some time, and think it's my adrenals still not working enough to give a quick burst of adrenaline to process the food. If I sit down for just 10mins after breakfast, or small lunch I'm ok, but if I try and do something straight away I feel absolutely knackered (sorry) for about five mins, then it goes! 

Doesn't seem to happen with a larger meal, maybe because it takes longer to eat it your body copes differently. Weird!! 

You experience something new every day with this thing called GCA. Could write a book, oh drat someone has! 

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

Dl, it's comforting to know I'm not the only one with "weird" experiences!

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

I don't think you, or I, are in the minority in respect GCA, PMR or Pred and weirdness! Perfect match made in heaven - or somewhere! 

[PMRpro Ambassador in reply to Celtic]

See my reply Celtic - cortisol moderates the immune response and a burst of immune system action is probably what causes a sweat in autoimmune disorders. As the dose reduced your body had to get the balance again...

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Ah, then DL and I aren't so "weird" after all!  We're normal!!!

[PMRpro Ambassador in reply to Celtic]

Well, as normal as we 3 wise monkeys are likely to be...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

You speak for yourself.....oh sorry, you do!!!!!!!!!!😉

[PMRpro Ambassador]

I'm in the throes of what is most likely a flare (raising the dose of pred deals with it at least) but what I have noticed is that although I feel pretty much OK at 12mg I still have sweats, day and early morning especially. Taking 15mg deals with the sweats too. 

So maybe you have reduced to a dose that is managing the other aspects of the PMR but isn't enough to suppress the sweats due to the inflammatory effect. One of the important roles of cortisol in the body is to do just that - and maybe your body hasn't quite got its act together now you are below the 7 or 8mg of pred that is the amount the body would produce normally. Is it better at 5mg? Maybe a tiny bit more and marking time at about 5mg for a few months would make the rest of the journey easier by letting your adrenal glands catch up. Celtic's wonder-rheumy likes that approach.

I've always dealt with the sweats by keeping the bedroom far cooler than most people seem to these days - if OH is cold he can have a winter duvet while I'm still under the summer one (we've used 2 single ones rather than a double for 20-odd years)! We've just had a night in a hotel - I thought I was swimming in bed - heavy winter duvet still and the heating was on! Back home last night - back to much more like normal. In the daytime I wear t-shirt vests and a shirt, if I'm cool I add a cardigan - and shed what I need to. And there is often a fan running nearby - not yet, it isn't warm enough but we have no heating on except in the bathrooms.

[Tasker2]

Thanks for your reply I also do all the thins you say 

[piglette]

I still have sweats. It was the first side effect I had with pred, my rheumy said it was quite normal! I think they have improved as I reduce and I don't look as if I have been hit by a tsunami so much. I find I often I wake up with them. I have not found a fool proof way of solving the problem though.

[Rusty8]

After reading your post I now understand my sweats could have been because of the pmr so feel a bit better now lol thought at the age of 70 I was still going through the change 😂😂😂😂 doctors never picked it up 

I hope your sweats sort themselves out as they are not nice 

Take care another June lol

[Pebble-Sue55]

My sweats always come when I am out in public, it pours out of my head and drips down my face, I go bright red. I look like I've just stepped out of the shower. I wasn't this bad during the menopause.

[Tasker2 in reply to Pebble-Sue55]

Hi pebble sue into just what you mean I have bought so many different coats I just don't no which to wear for the best I am back at the docs next week so I think it time for a blood test I haven't had one for some time .

[jinasc]

I found that, although I was still taking HRT, that the sweats were excessive.

Extract of Sage,    15 drops in water helped to reduce them significantly and I also tried Evening Primrose Oil, which I had used after my hysterectomy. 

Worth a shot?

[Tasker2 in reply to jinasc]

Thanks I will try that I can feel one coming one has type this of to put my head in the freezer only joking take care

[8sandylou]

Thanks everyone.  I'm still following even though I'm flying in the wind of all instructions due To Gps fears for my Spinal condition if I go ahead with Steroids....catch 22 for me.....blind if I don't....wheelchair/surgery/more chronic pain if I do!!!???.  So comforting to know the perspiration that pours down my face soaking my chair and weakness when I try to renew my household tasks 😔😔😔 Going to heal myself of infected scar....then going to charge myself with confronting my GP with the rusults of the myriad of test which were taken whilst I was in hosp pre TABiopsy....never shown to me other than two of the team working on me, telling me they were convinced on symptoms I had it......😰😰😰 So appreciate reading all your replies to everyone 😄😄😄

[Doralouise77]

I noticed something interesting for me.  As many of you described sweat just dripped off my head and down my back etc. But I noticed it stopped when I decreased to 17.5 couldn't believe it!.....however when decreased further,  had a flare so up it went again,  now on 20 and once again am dripping.   Does anyone else have the hot wet core but cold as ice feet, legs, arms and hands?

[Tasker2]

Hi animi i to have the sweats and cold feet ,but I am now on 4 preds a day but I have no energy I am back at my doctors this week I will see what he says  thanks for your reply