Night Sweats

[Underlee]

Hi all, does anybody on the forum suffer from night sweats? I've been suffering from them for the past six weeks which appeared at the same time as my PMR symptoms. I'm on 30mg of Pred a day but still wake up in pain in the middle of the night (and to change my wet t shirt!). 

[Hidden]

Hi Underlee, 

I know you have bowel inflamation on CT/PET and are under 50. I personally would really question a PMR diagnosis if 30mg of prednisolone isn't controlling your symptoms. 

Night sweats can go hand in hand with Vasculitis and other auto immune disease. Waking in pain in the middle of the night can be a feature of spondyloarthropathy / Ankylosing spondylitis. I am not saying you have either of these! Has your Rheumy done a full auto immune blood screen ( ANCA, ANA, Complements etc? ). 

[Underlee in reply to Hidden]

Hi Keyes, I'm not sure if I have had a full auto immune blood screen. I'm waiting on the results of a muscle biopsy and have an EMG tomorrow so I'm hoping I will know a little more in the next few days. My rheumatologist does seem very thorough though. I saw him yesterday and had more bloods taken so I will chase the results tomorrow )and I can ask about the full screen.  My petscan showed no sign of vascillitus but did mention Myositis which I assume us why I've had the biopsy. I'll look at the other conditions you mention to see if they tie in with my symptoms. 

[Hidden in reply to Underlee]

I just remembered about Polymyositis, it's definitely one of the PMR mimics and may explain your muscle wasting. Has your Rheumy checked your CK as well as doing a muscle biopsy? 

It does sound like they are being thorough, I hope you get answers soon. 

[Underlee in reply to Hidden]

Yes, my CK level is normal which does not tie in with polymyositis (although IBM can have a normal CK level - obviously I am hoping it's not that!). The doctors are being thorough but  I am pretty frustrated that I'm making little progress and not responding to the steroids as well as I'd hoped. 

[Underlee in reply to Underlee]

Oh, and I'm booked in for a colonoscopy in two weeks as well. Hopefully that will provide another piece to the puzzle. 

[Hidden in reply to Underlee]

Have they done a faecal calprotectin test? It's a very specific measure of inflamation in the bowel and a definite indicator of inflamatory bowel disease if raised ( although doesn't point towards a specific diagnosis such as Chrohns etc ). 

[Underlee in reply to Hidden]

No, I'm seeing the gastroenterologist for the first time on Monday so will ask him about that. I want to ask him if bowel inflammation can also lead to the muscle inflammation I'm experiencing.

[Hidden in reply to Underlee]

I have had GI problems as part of my auto immune disease. Thankfully Infliximab infusions  ( Biologics ) have helped. It seems to be a problem for some of us.    

[Underlee in reply to Hidden]

Thanks, I'll ask about that too

[PMRpro Ambassador in reply to Underlee]

I'm not sure it is that bowel inflammation leads to muscle inflammation - I think it is that they are both possible symptoms of whatever the autoimmune disorder is that you have. What your label ends up as is based on what they find - and they are obviously still looking! 

But like Keyes - I don't think this is going to be bog-standard PMR, it's PMR as the manifestation of something else. It has an awful lot of causes - unfortunately some doctors don't fancy a career as detectives...

And forgot to say - night sweats are a common symptom of lots of things, some nastier than others. I assume you have told your doctors and made sure they heard?

[Underlee in reply to PMRpro]

Yes, my consultant knows all about the night sweats. I didn't have one for the first time in weeks last night but I didn't sleep very well so think that might be a reason. On another note I've also started taking coated Prednisolone which seems to be taking a little longer to kick in than the uncoated. I'm off for an EMG shortly, so hopefully by next week will have more news on what I'm dealing with. 

[PMRpro Ambassador in reply to Underlee]

 Plain white pred takes up to 2 hours to peak in the blood with a steep increase and then it falls away over the following few hours. 

Enteric coated pred takes about 6-7 hours from taking to peak level in the blood - with a slower climb up and falling away afterwards being about the same but probably from a lower peak. 

Not tried it - but I imagine the area under the graph might be similar??????

[Underlee in reply to PMRpro]

I took 10mg at 2am this morning  when I was in pain and then the remaining 20mg at 5am when I woke up again. I haven't tried this split before and was worried that I wasn't leaving myself anything for later today. However, I'm feeling the best I've felt for a few days today so this could be the way forward for me. 

[PMRpro Ambassador in reply to Underlee]

Maybe you could take the first lot before bed? 2am with enteric coated is possibly a bit late for the early morning effect...

[Underlee in reply to PMRpro]

Yes I'll give that a go - you think between 10 and 11pm would be optimal?

[PMRpro Ambassador in reply to Underlee]

When you take it would depend on when you want it to take effect - assuming at least 5 hours to an effective blood level.

[Underlee in reply to PMRpro]

Ok thanks

[Celtic PMRGCAuk volunteer in reply to Underlee]

Hi Lee, good to hear that no stone is appearing to be left unturned for you in searching for a diagnosis. Whether it turns out to be PMR, Myositis or Ankylosing Spondyilitis, or whatever, IMHO you are under the best rheumatologist for miles around. Now that you have mentioned bowel inflammation, Ankylosing Spondylitis does seem as though it could fit the bill as It's symptoms include weight loss, early am stiffness, fever, breathing issues and GI problems (inc Crohn's/ulcerative colitis), which all tie in with your symptoms.  All the best with the upcoming tests.  A frustrating wait for a diagnosis for you, but you can have every faith in that rheumy. 

[Underlee in reply to Celtic]

Thanks Shirley, I have just come back from my EMG test and the findings are suggestive of "lumbar poly-radiculopathy" which ties in with the two slipped discs I have. Another bit of info to put in the mix!! Roll on next week when I get the results of my biopsy and hopefully get nearer to a definitive diagnosis. 

[Celtic PMRGCAuk volunteer in reply to Underlee]

I had to look that one up, Lee - I thought Polymyalgia Rheumatica was enough of a tongue-twister!  Sounds like another piece of the jigsaw - let's hope it's a small jigsaw with large pieces!

Personally, I don't think it takes much to upset the applecart when you already have a spinal problem.  Having had spondylolisthesis for many years prior to PMR/GCA, I remain convinced that my tumble off a train resulted in further damage to my spine, triggering PMR in my case, with symptoms manifesting themselves just a couple of weeks later.  In the absence of a known cause, there is obviously some trigger, be it environmental, viral or due to trauma.  We all know whilst travelling the PMR road that we need to avoid trauma/stress, whether emotional or physical, in order to avoid the risk of flaring inflammation, and many sufferers attest to a period of stress before diagnosis.

As you say, "roll on next week" - meanwhile cross fingers your symptoms improve and give you some respite.  

[Underlee in reply to Celtic]

Thanks Shirley, I don't think it's a coincidence that my myalgia started a week after my epidural for my back. I've had a good day today from a pain / stiffness perspective so I'm hopeful the coated Pred may suit me better. 

[Hidden in reply to Celtic]

Of course I had a Polymyalgic like presentation with my spondyloarthropathy including GCA type symptoms ( jaw claudication ) and a dilated aorta. I am afraid second half of the night pain continues to be a problem for me along with sweats. 

[Hidden in reply to PMRpro]

You can get a " reactive " arthritis secondary to bowel inflamation. I think that joint and muscle pain is fairly common in Inflamatory bowel disease. 

[Underlee in reply to Hidden]

Thanks Keyes, that's interesting, I'll discuss that with the gastro consultant when I see him on Monday

[PMRpro Ambassador in reply to Hidden]

Actually I did mention the association between "PMR type" symptoms in gastrointestinal inflammation in another thread a few weeks ago.  But given who his rheumy is - I doubt there's a lot to worry about in terms of lateral thinking..

[369yds]

Yes have had this the whole while . I've been on pred for two years and every half mil reduction brings me to a night of disruption where I toss and turn sweat profusely and feel as if I've run a marathon. After my body has got used every reduction I'm fine for a few weeks and when I reduce again it's like a viscous circle, people say it's you age it's rubbish ! I know it's not . Some days I'm exhausted where I've been so disturbed and if I get up walk around abit have a cuppa and can go back to bed and sleep a few more hours. Been the mock of many friends who have no idea what it is like are you still in bed ??? 

[Underlee]

I've actually got used to the night sweats now but it would be nice to have just one night of pain free uninterrupted sleep.

[Jora]

When I first got Polymyalgia-onset RA, I had terrible night sweats.  I had to change my nightie here times a night.  I sleep alone in a King size bed ( that sounds sad, but isn't!) so I moved from wet side to dry side.  When that also got wet, I resorted to towels.  I was in too much pain to change the sheets.   Once I was on methotrexate, the night sweats stopped.  I'm also on 7.5 mg Prednisilone and still sweat on the slightest exertion, but it's nothing like it was.  Jora

[43-19gummy73]

Hi Underlee, diabetes

There a few reasons, you can get these from the net although in diabetes and during the night can indicate low blood sugar as one of the responces, diabetics if they wake up at that time can take a reading on their monitor to establish blood/sugar levels. I wont go into the details but many years ago in psychiatry, before the avent of drugs, and is now the medical model for treatment. If you were admitted to hospital, quite often the asylum, one of the treatments administed to very ill people was to induce a coma by injecting insulin, this made the patient sweat profusely as the sugar levels dropped and then lapsed into a coma, this could also induce seizures in the patient and frequentely died a result  ?????? Who ? Really was insane here? The doctors or the patient. The medical scientists thought this may cure or in some way heal the patient?? The lesson here is to question everything and if dosent make any real sense you know what you must do......................its your life, nobody elses.    ( We are talking far less that a 100 years ago)

[FiDewey]

I do - end up with a soaking duvet. Not linked it to my PMR as I only get minor flares at the moment

[pammy_hyland]

Yes the steroids make me have sweats too especially at night ! They are getting alot better as I am lowering my dose. 

[elainemwh]

I get hot flush type symptoms which I  get day and night. I thought this was a side effect of the pred

[Underlee]

Thanks Kai, I'm a 45 year old male so I'm not expecting any changes soon! 😄

[Underlee]

😀

[PMRpro Ambassador]

I had a laugh when I read your post  - but I had read the first chapter...

[jbarie1]

I see some people are advising night time steroids....the rationale for night time steroid escapes me. "Adrenal output" in the normal individual  as designed by nature should be  be correlated with stress & activity...not  night time rest and recovery....I take additional prednisone when I'm sick or subject to additional stress beyond my baseline.

[alfredbrian in reply to jbarie1]

I may be partly responsible for this! My GP told me that the steroids took 5 hours to become effective and so I asked the Forum whether anyone had considered taking their prednisone if they woke in the night. (I am 79 years old and never go through the night without getting up at least once.) I had many replies saying "Yes" that exactly what they had been doing. I've now started and find I feel much better first thing.

[PMRpro Ambassador in reply to jbarie1]

If you are taking ordinary white non-coated pred tablets a study found that the optimum time to take them in terms of relief of morning stiffness was 2am - it takes 2 hours for them to be absorbed and the peak level in the blood to be achieved and the inflammatory substances that cause the morning stiffness are shed at about 4.30am, just after that is achieved. 

As a result, a new formulation of prednisone was developed with an outer coating that breaks down and releases the pred in one fell swoop after 4 hours under the right gut conditions: taken within 3 hours of food at 10pm, so releasing at 2am, peaking at 4am, it led to greatly improved management of morning stiffness and also to lower doses being required. It is on the market as Lodotra in Europe, Rayos in the USA.

In PMR the rational for the pred is to manage the symptoms, predominant amongst which is morning stiffness. Adrenal function is actually a side-issue in this question - you are taking your pred for management of inflammation and most of us are on a dose that is above the so-called physiological level of 7mg and there is almost certainly going to be adrenal suppression.

If the major problem you have is morning stiffness then you need to take the pred at the best time for YOU - white pred tablets about 2am, with enteric coated it takes some hours to get to peak in the blood so you'd benefit from taking them earlier.