Night sweats etc.

[Washingup]

I am tapering down from 30mg pred since April 2022 and I am now down to 3mg (4mg alternate days). I am finding I am having a lot of night sweats. Has anyone found else had this problem and if so how long it lasts for? I have to add that I have recently been diagnosed with osteoporosis, and didn't know I had this condition until MRA scan found fractures in my spine and pelvis which I have been in agony with, even though I'm on morphine. Doctor blames pred of course for my condition but he has only recently put me on Vit D,/calcium and alendronic acid tablets. Thinking he should have put me on these tablets from the start. So glad for this forum for others with this condition.

[DorsetLady PMRGCAuk volunteer]

You will see related posts now you have written this… many suffer from them so plenty of advice therein - but if the sweats have only come on recently would say it could be adrenals still stuttering - so maybe have a look at this link -

healthunlocked.com/pmrgcauk...

Sorry to hear about your osteoporosis, and agree doctor should have considered bone protection medication -certainly vitamin D/calcium supplement for it [in the guidelines] plus a DEXA scan to see if AA required .

Most people complain about being put on AA automatically….. so it’s food for thought to hear what may happen if these thing aren’t checked…. But sorry to hear it’s happened to you…

[Washingup in reply to DorsetLady]

I realize now that my GP should have put me on these medications along with my pred. If I only knew then what I know now.

[DorsetLady PMRGCAuk volunteer in reply to Washingup]

. If I only knew then what I know now.

Never a truer sentiment for many - in my case I wouldn't have lost sight in one eye! 👁️‍🗨️

[Joanbill13 in reply to DorsetLady]

why did you loose sight in your eye if you don’t mind me asking. I’ve got glaucoma and always worried about my eyes

[DorsetLady PMRGCAuk volunteer in reply to Joanbill13]

Short story…GP misdiagnosed me for 18 months - so attributed all symptoms to other things… until I ended up in A&E

Longer story here - healthunlocked.com/pmrgcauk...

[Washingup in reply to DorsetLady]

Gosh! I have read your full story on the attached link above. What a journey you've been on! Makes my problems seem inferior in comparison.

[DorsetLady PMRGCAuk volunteer in reply to Washingup]

Don’t ever think your problems are inferior - they aren’t -and they have great significance to you and your QOL.

My late hubby who had coronary issues for the last 17 years of his life despite (or maybe because of) being a roughy toughy soldier and outdoor man for the previous 50 odd years once said after I’d said something like ‘there are people worse off than us’

“other people may be suffering more pain than me, or less pain than me and I’m sorry about that, but my pain is my pain -and that’s all I can do something about”

That may sound selfish, but it’s true - we all have our own issues -and no one’s is more important than yours when you are going through them.. 🌸

[Washingup in reply to DorsetLady]

Makes me think how life can be cruel. I pray every day for at least some relief from the pain I'm in, but my prays don't seem to get answered.

[DorsetLady PMRGCAuk volunteer in reply to Washingup]

Unfortunately most, if not all, of your pain is being caused by things other than your PMR so we probably cannot help as much as we’d like to. So sorry 🌸

[Joanbill13 in reply to DorsetLady]

Thank you. Hadn’t read your story before! How awful for you x

[PMRpro Ambassador]

I found sweats when tapering were a sure sign I was on the borderline of enough pred and a flare might be threatening. But low adrenal function will do it too.

Your GP SHOULD have told you to take vit D and make sure your calcium intake was high or take a supplement - that has been shown to be protective. And we believe a DEXA baseline scan is essential - some have low bone density even before pred. On the other hand - after 12 years of pred my bone density was very little lower than it had been at the outset. Usually they are pressing the stuff in your hand together with the pred script.

[Washingup in reply to PMRpro]

Hope it's not a sign of a flare. Couldn't stand pmr pain on top of pain I'm in now. Think I would be suicidal. Thank you for your advice. Any signs of a flare I will increase pred as advised to other pmr sufferers. Once again "thank you"

[PMRpro Ambassador in reply to Washingup]

The spinal fracture WILL improve with time - but it is slow. Were you given a corset or brace to reduce the pain?

[Washingup in reply to PMRpro]

No nothing like that has been mentioned just physio exercises which I am doing religiously.

[PMRpro Ambassador in reply to Washingup]

What is the physio supposed to do?

[Washingup in reply to PMRpro]

To help my back fractures to heal. I'm finding the pain in my groin is worse now and seeing the physio on Wednesday. I must get better my husband will need looking after his operation on Friday and I will be his carer when he's home friday night.

[PMRpro Ambassador in reply to Washingup]

Make sure they know about YOUR problems and then they SHOULD keep him in a bit longer as there is no-one fully fit to look after him at home. Make a fuss - if you can't get another family member or neighbour to help. Tell the physio.

[Washingup in reply to PMRpro]

Thank you for your advice. Family are all on holiday, so I will see how I am on Friday.

[Blearyeyed]

If your adrenals are still reacting slowly it can effect how well your Autonomic Nervous System reacts to changes , just like when you are on higher doses of steroids.This can cause the sweats and chills , fatigue , sleep after eating, feelings of anxiety for no obvious reason , sleep issues, palpitations and brain fog because the ANS is in charge of how well and how quickly your body reacts to changes.

Did the GP test your Vitamin D before you started it?

If you had been Deficient in Vitamin D it can also effects your temperature regulation .

[Washingup in reply to Blearyeyed]

No he didn't test for vitamin D.

[PMRpro Ambassador in reply to Washingup]

It is actually a rule-out for PMR diagnosis as low vit D can cause very similar symptoms. And I am positive my 4000 IU vit D has a lot to do with my lack of problems with bone density!

[Blearyeyed in reply to PMRpro]

Definitely, the inflammation and steroids deplete your Vitamin D like a double whammy. They have a similar effect on your B Vitamins too which is why I'm surprised now that people don't get advice about that too, as Vitamin B 12 Deficiency can mirror the symptoms of Chronic Fatigue and Adrenal issues.

[Thiago1396 in reply to Blearyeyed]

I eat a banana each day for potassium and they are rich in vitamin B12

[bbugsyyy]

When I first started on Prednisone, I frequently had night sweats. I had to change shirts most nights, and also developed rashes and zits. I'm now down to 6mg daily from 20. I still have seating issues, but not as bad or frequent. I also sweat more when exercising and after showering.

[S4ndy]

I've had "head" sweats and night sweats since being on pred plus other meds that have this as a side effect. I haven't been able to stop it but I've bought a few things that really help.

Check out Cooling sheets on Amazon. They are great. Made from a special "chill-max" fabric developed in Japan they state that they lower your body temperature by 5c Not sure about that claim but they are certainly cool at night. They do pillow cases too which are wonderful especially if you put a cooling gel pad inside on top of your pillow. I've been using them since June and it has really helped with the night and head sweats. I've got 2 pillows I use with the special cover and gel pad in my room and at night I swap between them if I wake up. You can use them with any pillows and this means you can use your favourite ones. This gives me more cooling throughout the night. I was so happy I've now got 2 sheets and 4 pillow cases so I can regularly wash them.

My son and his flatmate both bought them after my recommendation and they say the same thing.

[Washingup in reply to S4ndy]

Thank you for your info will give them a go!

[Petros-1931]

Yes I suffer with night sweats, difficult to pin down reasons, could be due to stress or other problems. Mine are usually 3/4 am 'cortisol' time, sometimes 'loo' time, roughly 4 hours sleep at best. Then getting back to sleep is another problem

[Washingup in reply to Petros-1931]

That sounds roughly my timings of my night sweats. Mine are worse than the menopause sweats 😂

[gwenyth]

I had night sweats last year, as well as muscle aches and pain and increasing fatigue. I attributed it to increased Pred and a surge of PMR (it was different from hot flushes). Took 6 months to be diagnosed with endocarditis, resulting in multiple valve damage and complex heart surgery. Quite likely 4 years of Pred use made me susceptible to the infection.

Not saying this applies to you but it is hard to diagnose and very dangerous.

[Washingup in reply to gwenyth]

I might mention this when I see the GP. Thank you for your experience.

[PMRpro Ambassador in reply to gwenyth]

Had you had a Covid jab? Or Covid itself?

[Washingup in reply to PMRpro]

I've had Covid twice and had all the jabs. It was catching Covid the first time that triggered my PMR.

[PMRpro Ambassador in reply to Washingup]

No I wondered if you'd had either shortly before the endocarditis symptoms started - known effect.

[gwenyth in reply to PMRpro]

No - dentist.

[gwenyth in reply to PMRpro]

Some Covid vaccines (mRNA) may have caused some cases of myocarditis or pericarditis, mostly in young males, but not infective endocarditis mostly caused by bacterial infection. Probably not helpful to suggest otherwise.

[PMRpro Ambassador in reply to gwenyth]

Wasn't suggesting anything but you didn't say it was infective and the idea the carditis is only in young males is incorrect, a more perisistent myocarditis has been found in older patients in a study done in Germany, I had the bivalent jab last November and within hours my very occasional, very well controlled, paroxysmal atrial fibrillation exploded into life with 12 hour episodes almost daily for the next 6 months. A drastic change of medication helped. The symptoms of myocarditis are rather vague - I had some of them.

[gwenyth]

I did mention infection. "Mostly in young males" and endocarditis is not the same as myocarditis.

[PMRpro Ambassador in reply to gwenyth]

I'm aware of that ...