Night sweats

[mariandrakeford52]

I am new to this site after being diagnosed with PMR in October I am currently taking 10mgs a day prednisolone. Since taking them my pain have gone but get insomnia and excessive night sweats. Is anyone else affected this way

Marian

[PMRpro Ambassador]

There'll be a queue to say "me too"! Most of us probably!

However - both the poor sleep quality and the night sweats can also be due to the underlying autoimmune disorder that causes the symptoms we call PMR. I get increased night sweats when I have a flare - that isn't the pred, it is the increased activity of the disease. The night sweats don't help the sleep either.

[Hidden]

Hi Marian

Welcome 💐 as PMRpro says most of us. I get my 'sweats' in an evening so it's fire off, lounge door open & at the moment wig off! As my hair is still 'recovering' after Chemo 💁🏻

High doses of steroids keep me awake but I'm on 7mg at the moment so not really affected.

You may find it improves as you decrease the steroids.

Best Wishes

Mrs Nails 💅🏼

[mariandrakeford52]

Thanks for the reply both I appreciate it seeing gp next week hoping he will reduce to 5 mg. but it helps to know it's just not me

Marian

[PMRpro Ambassador in reply to mariandrakeford52]

I really would NOT recommend dropping to 5mg in a single step - it is likely to lead to all sorts of problems. No reduction should be more than 10% of the current dose and you were exceptionally lucky in being able to reduce from 20 to 10 - most people would have been back in the same state they were at first!

[Rose54]

Hi

10 is a very low starting dose but thinking of going down to 5 is a too big a decrease you may find all your symptoms of pain return.

I would reduce by 1 at a time

I am at 9.5 only reduce .5 at a time.

Good Luck

Rose

[mariandrakeford52 in reply to Rose54]

Thanks rose I started off at 20 now 10 so don't know just wish o could sleep

[olive2709]

Cotton next to skin helps , only thing to remember is if pictures on front check that they are not plastic

[Mary63]

Definitely ' me too! as regards night sweats. But I seem to suffer far less when I am on the dosage of pred that deals with my symptoms.

I was on 9.5mg in December with increasing sleep problems, horrendous fatigue and night sweats....no significant pain. Following advice from this forum that I may have been decreasing too quickly ( I was watching for pain as a sign that the steroid dose was too low, and therefore had kept going with DSNS reduction despite fatigue, sleep issues and sweats.) Well, blow me down, I boost back up to 11mg..no change, but 12mg stopped night sweats, I now feel very little fatigue and I have had 3 good night's sleep. So I am presuming that the sleep problems , night sweats and fatigue were ( for me ) not just the disease, but because it was not being controlled by an appropriate dose of pred. All of that said I am not going to go mad with activity now that I feel better.

is 10mg too low for you at the moment?

The very best of luck.

[PMRpro Ambassador in reply to Mary63]

I have wondered that too - I can be fine at a given dose other than being woken in the early morning with sweats. Slightly more - the sweats improve out of sight!

[mariandrakeford52]

Thanks all I wonder now if I'm not on the correct dose I'm not in any pain at the moment but night sweats and insomnia is dreadful. Feel less anxious now a little more about the illness

[PMRpro Ambassador in reply to mariandrakeford52]

Knowledge is power - and PMR really isn't that scary once you understand how it works!

[Mary63]

You are in exactly the same position I was in a few days ago. I am beginning to realise that pain is not the only sign to look out for when reducing dosage. Seems to me that fatigue, sleeplessness and sweats are also possiblities. BUT they can also be side effects of pred. Tricky to make a judgement call!

[mariandrakeford52 in reply to Mary63]

Yes I see that Mary it's hard to know if it's the illness or part of the cure. I dread going to bed at night. Struggling to work at present although I'm retiring in 12 weeks so want to keep going

[PMRpro Ambassador in reply to mariandrakeford52]

I think it is fair to say that if you had sweats etc at higher doses of pred that then improved as you reduced and returned as you reduced further, the ones that are returning are probably PMR rather than pred. You do get to know your body and your disease eventually providing you listen to it and often it helps to keep a diary with such changes noted. People have said that being able to look back did help them sort out what was what.

[Mary63]

Just read everything you can on this forum Marian. There is so much knowledge here, and so much to learn for us relative newbies. I find the range of difference and nuance in all sufferers fascinating. While at the same time I can see patterns of difficulty amongst our community keep repeating themselves. Poor PMRpro, Dorsetlady Heron etc etc have endless patience in repeating the same old advice to us all ad infinitum but it's all good stuff, and thank god for it!

I do understand where you are coming from re dreading going to bed at night. Not too early...even though you are knackered you feel then that your early morning wake or glance at the clock might be 1am instead of 4am .. which is bad enough! Then do you get up and do stuff or toss and turn? Tricky...

Are you working full time? Cos I think very few people with PMR can manage that. I certainly cannot any more. Poor you! I hope you sort out your present PMR problems very soon.

Mary

[mariandrakeford52]

Thanks for your comments Mary it appears you feel exactly as I do at night. I currently work 30 hours which I am really struggling with particularly as I feel so fatigued due to the lack of sleep. My brain seems to be in a fog for much of the time and I can't seem to organise myself as I once did. So it's time to go for me I'm afraid. I have struggled for the last few years trying to get a diagnosis and pushed myself to keep going for fear of stiffening up altogether.

This group is really helpful and I appreciate all your comments and support

[AvisF]

This is a strange illness with many variations it seems.

I had the sleepness nights and awful night sweats before I was diagnosed with probable PMR.

The sweats stopped once I was on Prednisolone (initially 15mg then 12.5 mg and now 10mg)

So it looks like the sweats for me were from the PMR rather than the steroids.

[mariandrakeford52 in reply to AvisF]

Hi Avis

My body temp at night has been high for a few years before being diagnosed but only experienced awful night sweats since taking the steroids! Its so debilitating

[PMRpro Ambassador in reply to mariandrakeford52]

It does help to keep your bedroom much cooler than usual and layer the bed clothes. In the summer I often have a fan running - we don't have air con, few Europeans do, but I don't really find air con helps reduce the sweats, it tends to make me get chilled instead.

[SheffieldJane]

I sweat during the day embarrassingly. I was standing in a frosty park playground supervising my grandson with wet hair! I mean how do you even begin to explain?

[AussiePolyDee]

Hi SheffieldJane,

I commiserate with you re the daytime sweats! But great comfort in knowing its not only me! I was shopping with a friend and just felt like I was burning from inside out, not pain, just intense heat, and sweat rolling down face and neck, hair drenched. She said if she had not seen it happen so quickly, would not have believed it. Passes off reasonably quickly, but like going thru menopause again (from what I remember! lol)

So glad I've found this site and the wonderful info and personal stories here. Was diagnosed with PMR almost 7 years ago..... seemed to be under control until July 2016 (on 1mg maintenance dose, could not seem to go beyond the .5mg without a mini flare) then had the dreaded total knee replacement and then wham! 3 flares over 3 weeks.... ended up on 20mg pred but now down to 15mg and doing the dead slow reduction

Again, thanks to all who give benefit of their experiences to this site, I am so pleased I have found you and also received the dvd and little pansy pin (which I wear proudly! haha)

Regards