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Fiery hot sweats

Posted , 9 users are following.

helenemiles
helenemiles

hello

I have experienced a number of night sweats over the past 3 months since becoming unwell (no not the menopause before you ask lol )

I have noticed that since I started on 'pred' last Tuesday these seem to have increased in intensity  and frequency ..... Waking dripping from the shoulders upwards !!!! Pillow ,sheet wet !!!!!!! 

Is this a symptom others have also experienced ?

i had noticed over the past couple of weeks through out the day I also find that I appear to be really flushed feel very temperaturary on and off ...... it's like a burning furnace out of control .....

Helene 

the more I reflect the more I am becoming aware that I have had subtle symptoms for a very long time until my body decided to crash ! We often are kinder to others than recognising that we also need to be kind and take much more care of our selves .... 

 

0 likes, 27 replies

27 Replies

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  • Juno-Irl-Dub
    Juno-Irl-Dub helenemiles

    Posted

    Hi there, do you have PMR or are you taking Pred. for some other reason?  If you do indeed have PMR  I think that night sweats are indeed part of what happens. I don't know whether the're caused by the high dose Pred. that you're on at the start of the treatment or the PMR itself. Or both. From my experience, they ease off after a few weeks/months. So don't panic. If you've just been diagnosed, just remember that in most cases PMR is a self-limiting condition - so it's quitte likely that in a couple of years or so you'll be fine, maybe off the Pred. or at a low maintenance dose. Keep in touch with this forum and you'll learn lots from some impressive experts and many kind and helpful others. Kind thoughts going your way already!!
    • helenemiles
      helenemiles Juno-Irl-Dub

      Posted

      Hello 

      thank you for your comments , been rough for a number of months now and PMR is now being ????? Vit d defieciecy detected lots of other symptoms that have been going on for some time . Have not been right in my self for well over a year I don't think ... Looking back .Assessed in hospital last week due to deterioration in pain ,mobility etc , lots of x Rays taken urgent rheumatologist apt to follow as he was not available on my admission . Few other tests pending . Popped on 'pred'allowed home on agreement to see as out patient . Seeing GP in the morning .

      helene

  • ptolemy
    ptolemy helenemiles

    Posted

    When I started on pred it was like being in a hot shower. My male rheumy laughed and said it was a side effect. I am on 10mg pred at the moment and it is a lot better, thank goodness, I now get damp rather than wet hair. 
    • helenemiles
      helenemiles ptolemy

      Posted

      I'm thinking of taking a hair dryer to bed lol and spare sheets !!! It's vile good job I can chuckle about it as I now know I'm not alone in my early morning shower 

      helene

    • ptolemy
      ptolemy helenemiles

      Posted

      I love it, perhaps we should be sleeping in a wind tunnel! I think this is much worse than menopause.
    • EileenH
      EileenH ptolemy

      Posted

      I found a fan in the bedroom and layers I could chuck off when necessary helped a lot.

      However - since I've been on beta-blockers for atrial fibrillation the sense of my own personal central heating has gone. Much to the husband's delight as now I am even colder than him...

    • helenemiles
      helenemiles EileenH

      Posted

      Didn't think of a fan smile

      i only sleep with a quilt and pj's , tend to just throw it all off until the fire ceases !! Thank goodness I sleep alone ... No one to disturb and soak lol 

  • janet08828
    janet08828 helenemiles

    Posted

    Hello Helene

    Yes unfortunately this is something I recognise only too well !!

    I can only offer sympathy and understanding - and if you are anything like me - the only advice I can give is - you get used to it.

    I get so overheated - sweat literally pours off me - pretty revolting really!! - no rhyme or reason - just heat, day or night.

    I have been on pred for over 2 years - I had just got over the hot flushes of menopause when this illness took over - lucky me!

    Why are you on pred? I have GCA and it is taking its own sweet time in burning out - still I am gradually getting the pred dose down and am optimistic that this furnace inside will also disappear.

    Good luck with it - sorry if I am the bearer of bad tidings -

    Janet

    I don't know of any relief for this - be wonderful if someone had a tip.

     

    • helenemiles
      helenemiles janet08828

      Posted

      thank you Janet for sharing your experience with me .

      Think I possibly have PMR diagnosed severe vit d defieciecy ... Symptoms have gone from bad to worse over the past 3 months which led to frequent trips to G P then hospital acute assessment lady week . 

      Symptoms :

      severe pain started hips .. Elbows, left thumb, then shoulders , eventually into my back 

      have never felt so rough mobility rubbish , balance poor , brain foggy at times ... Words just don't come out when I want them too. Severe hot flushes .

      lost lots of weight about a year ago , that's when my hips started giving me Jip! 

      Knew it wasn't the menopause as I went through this early St the age of 45 now 49 .

      Whilst in they took lots of x Rays as rheumatologist was not on site !! Popped me on steroids and am awaiting urgent out patient appointment .

      the pain in my back and shoulders did ease 48 hours following taking pred but I am exhausted an have found that just doing little things hurt and arrivals everything again .... But not to the extent to the state I was in last week .

      I have experienced awful temple headaches and pain in the back of my neck . The pain seems to shift ... 

      I am a novice if this is PMR and really appreciate everyone's stories as hopefully this will help me manage my symptoms a little better .

      thank you again for taking the time to reply , I really appreciate it .

      helene 

    • janet08828
      janet08828 helenemiles

      Posted

      Poor you - reading this took me back to when I first began this journey, it seems so long ago and I had forgotten just how rough I felt - recognised it though as I read your mail.

      Confusion and worry, going from being an "ordinary" mobile, energetic person who just gets on with life to being a totally different person, tired and disinterested and in pain. Yeah - not a nice situation, especially the not knowing what is going on - it really isn't nice at all.

      That's why I found this forum to be such a godsend - people understand and you can get answers to some questions - even questions that you didn't know you had - there are quite a few "oh yes" moments.

      Some of your symptoms do sound as if GCA could be on the cards, I hope that you get into the right treatment for you soon so that you can begin on the road back to some sort of normality.

      As for the internal furnace - reading the responses you have recieved it does sound as if most people have experienced a shorter time of the sweats - maybe I am just unlucky - but then again I am having a hard time getting down to a maintenance dose of pred.

      Hope that you feel better soon

    • helenemiles
      helenemiles janet08828

      Posted

      Thanks Janet 

      the forum has brought be comfort despite feeling totally miserable and as if I now poses some one else's body !!! 

      Lets hoping I and everyone else out there who is struggling at the moment feels a little better soon .

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      If the head pain gets worse or you get ANY visual symptoms please go straight back to the hospital. An urgent appointment is not what you need, the word is EMERGENCY. Urgent just means sooner than routine and can still be weeks. If there are any signs of GCA it is a medical emergency - like a stroke or heart attack.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey helenemiles

    Posted

    Helen, night sweats can be one of the first symptoms experienced leading to a diagnosis of either PMR or GCA or both - a sort of fluey feeling.  Unfortunately, the steroids themselves can then aggravate those sweats day and/or night.

    The good news is that for most of us the sweats reduce as the inflammation gets under control and the steroid dose is reduced.

    Meanwhile, avoiding coffee, chocolate and all caffeinated drinks may help, especially later in the day.  Even a small glass of wine used to set mine off.  

    • helenemiles
      helenemiles MrsO-UK_Surrey

      Posted

      Oh thank you so much for your reply , that is reassuring to know .....we'll some what smile 

      I really appreciate your comments . I will take on board your advice and see if this helps .

      many thanks .

      Ps 

      My hips and elbows are easing a little but my head and neck seem to be getting worse ... Does this also sound familiar ? 

      I thought  I would be running around again by now ... But sadly not , feeling very sorry for my self right now lol smile

    • MrsO-UK_Surrey
      MrsO-UK_Surrey helenemiles

      Posted

      Helen, pain in the head and neck can point more in the direction of GCA than 'just' PMR.  The inflammation of PMR is in the muscles, whereas in GCA it is the arteries and blood vessels that are affected.  You haven't said what dose of steroid you are taking - if you do, in fact, have GCA, that requires a much higher starting dose to control the inflammation than PMR.  For GCA, you need at least 40mg, whereas for PMR 15-20mg is recommended.  If your GP does suspect GCA tomorrow, then he should pick up the 'phone and arrange an immediate appointment with the earliest available rheumatologist in your area.  I was referred within a week once a fourth GP sat up and took notice!
    • helenemiles
      helenemiles MrsO-UK_Surrey

      Posted

      Hi

      they did mention ? Arteritis /vasculitis when in hospital on Tuesday and were wanting to look at another angiogram (had a small stenosis in the back of my leg 5 years ago , do have peripheral vascular disease ) they popped me on 20 mgs .

      Think I will be seen asap following my admission hence why they wanted to do the full body x Rays prior to my appointment so that he has them available to hand .I will certainly discuss with her in the morning .

      Thank you got your support , will keep you posted .

      And there's me being very optimistic telling my boss ' sure if I have a dose of steroids I will be feeling great ' !!!! May be a little too optimistic ..... 

      Dont think work is on the cards at all at the moment 😞

      helene 

    • bronwyn97278
      bronwyn97278 MrsO-UK_Surrey

      Posted

      Hi MrsO and others:  I know not very much about PMR & GCA, only (originally) that it existed and a condition within the realms of Rhuematology , and now from what all say on this forum.  However, am wondering on this topic re the continual "sweats".....if all of the problems are related to infected/inflammation...do you think it could be that once the Prednisone starts to defeat the inflammation, that it is like when we have a very bad/high temperature, and our Immune system is fighting the temperatures, causing the sweats....????  I don't know the answer, am asking if you all think this could be the reason??    Bron
    • MrsO-UK_Surrey
      MrsO-UK_Surrey helenemiles

      Posted

      Helena, it sounds as though your medics are being very thorough with their investigations.  GCA is a vasculitis (but there are many different forms of vasculitis) also known as Temporal Arteritis but unlike GCA which can affect arteries throughout the body, TA is generally confined to the temporal arteries at the side of the head, and it is in this case that immediate treatment with at least 40mg of steroid is necessary to offset the risk of the large cells blocking the blood vessels to the optic nerve, causing loss of sight.

      I do hope you get a definitive diagnosis soon and the correct treatment started to get you back on the road to recovery - good luck.

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey bronwyn97278

      Posted

      Bronwyn, as with any inflammatory illness, we can experience sweats similar to those of PMR and GCA.  It is the inflammation of PMR and GCA that can cause the sweating associated with fever-like illnesses, and generally embarking on treatment with steroids at the correct dose will take care of the actual fever.  However, the steroids themselves can bring their own side effects, including sweating/flushing.  Some suffer more than others in this respect, and I can remember dreading any really hot days.  The worst area for me was my head and the perspiration used to drip down the back of my neck - forget keeping a good hairstyle!  

      There is no answer unfortunately, other than to avoid all caffeinated drinks, and alcohol if you are affected, and wear just cotton clothing, including undies.  Cotton sheets will be better than polyester mixtures. With cotton clothing, the perspiration is allowed to escape whereas with any other material it will just get trapped leading to more discomfort.

      Strangely, although my sweats improved immensely as I lowered the steroid dose, I always seemed to experience an episode immediately following a reduction in dose and whilst eating or immediately following a meal.  

    • EileenH
      EileenH bronwyn97278

      Posted

      I don't think it is that side of sweats - more the complex hypothalamus/pituitary/adrenal set-up is sent into a whirl. It's much the same as in the pre/peri/post menopausal sweats - hormonal messes. Not everyone suffers the sweats either with PMR where it can be running a low fever or with pred.

      It would be nice to know WHY - but as I say, mine all but disappeared once my atrial fibrillation and intermittent high BP was sorted out.

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