I can't be sure exactly when it started, but around the 6mg pred dose I found myself sometimes waking after about an hour's sleep with my heart pounding (not fast) then a tingling sensation spreading through my body followed by uncontrollable cold shivering. This lasts anything from 10 to 30 minutes and could occur randomly several times a week.
At 5mg I was also experiencing increased fatigue, headaches, earache, some sinus pain across my cheek and aching shoulders. Suspecting a flare and following the often repeated advice on this wonderful forum, I increased my dose to10mg per day for a week and ...no shivers, no headaches, no earache etc. Also noticed significant lift in mood and energy levels. Yesterday was my first day back on 5mg and, you guessed it, last night the shivers returned.
My question is, are my symptoms due to lack of adrenal activity and should I just persevere with the DSNS reductions? I'm aware that my PMR experience has been straightforward compared to many others but the support, encouragement, knowledge sharing and compassion from this group which I visit daily has helped so much. Thank you.
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Clarbeston
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Would plump for the adrenals struggling…..and normally the only way to get through that is very slow tapering as per DSNS as you are doing….plus only 0.5mg a time (if not already) and patience.
Took mine about 8-9 months whilst tapering very slowly to stutter into life. …not shivering, but random bouts of fatigue.
Thank you for your prompt reply. Sometimes it's just reassuring to have one's ideas confirmed. I will stay at 6mg for a month and then reduce more slowly. I was doing 1/2mg a week.
That would have killed me. I did 0.5mg over anything from 6-14 weeks depending on how each reduction took me. Generally the lower I got the slower I went.
I have tapered to 2.5 using DSNS but find the the taper not so easy so am doing 2.5-3 again to rid the niggling pains. My GP doesn’t think I have PMR now but I certainly think otherwise and am not prepared to go faster to find out
With DSNS you can repeat any step several times to slow it even further and it is a good idea as you get lower and lower in dose and the percentage change increases.
Hello, your message arrived in my feed although not addressed to me. BUT as always relevant and informative. Thanks again for giving so much of your time to this forum and warm wishes to you
I'd blame adrenal function until proven otherwise. Maybe going back to 6mg and tapering the next mg much more slowly - only half a mg and using a very slow slowed taper might help?
Thank you for your prompt reply. Sometimes it's just reassuring to have one's ideas confirmed. I will follow your(as always) greatly appreciated advice.
I woke up - pain all over my body - cold inside - shivering. A bit different to your symptoms. Husband called ambulance and I was very quickly picked up.However, a friend had symptoms similar to yours over a few days and was hospitalised soon after - sepsis!!
I didn’t want to frighten you but thought I’d better mention it.
I have the problem of feeling freezing cold when in bed even though I am actually quite warm. It is most strange as I shiver and yet my body is warm. I reckon it could be the adrenals.
I have experienced shivering and fatigue through my tapering journey. Following a very busy day I felt so ill and had shivers that I went to bed at 5pm and slept until 8 the next morning. The next time I tried taking an extra 1mg of pred and felt better! So for me the mystery was solved! Taking it easy has never been my strong suit but I have learned I can't bully my way through this. I have learnt patience and I am currently taking 6 weeks to get from 2mg to 1.5mg every third day (2, 2, 1.5 repeat). If I don't feel my body is ready to move on to the next stage I will stay with this dose until the time is 'right'. Painfully slow but determined not to mess it up this time 😊
Hi experienced this with a real feeling of unease, my GP tested thyroid and adrenal function. The adrenal function was on the low side but within limits, it happened several times but eventually settled, hopefully the same for you, as others have said make sure you are checking your temperature, sepsis is always to be considered
Thank you for taking the time to reply. I have learned so much from this forum. Knowing others can offer support is a bit like having a safety net when on a high wire.
Yes! It started as I reduced to 4.5mg last week. Not every night, but a very strange feeling…as if the shiver passes from top of body down to toes…body shimmering!! It lasts about 5 -10 minutes with me. Only at night, so far. Tbh, I thought it was a drug side effect & hadn’t paid attention to it, but found it weird. Thanks for posting, another PMR joy. Only trying to taper 0.5 mg, thought it would be easier now I’m going slower!! S x
I only get about 4 hours sleep a night, so am really rather annoyed (!!) that something else is waking me now! Yes, it wakes me up, for sure. I only had the pounding heart once, but then the shivering has only happened four times…only started about ten days ago. I took my blood pressure next morning & it was the same as always. I will note if it happens again, & let you know re heart pounding, but I went back to 5mg today so it may not occur (hope springs eternal)! Thought I was going a bit bad. Knew I wasn’t cold as electric blanket on all night as I have sciatica atm.
Sorry to hear about the sciatica..can be really painful! Hopefully it will pass soon. Have you tried exercises for it ? That can sometimes give a bit of relief .
Thanks, yes tried the lot, exercises every morning , had physio too, tennis ball, it’s been six or seven weeks at least now! It will go when spring arrives hopefully!
Agree with what’s been said. However if symptoms persist would definitely have it checked out. Those were my symptoms for GCA along with hoarseness. I also had low grade fever with the shivers.
Thanks for taking the time to reply. The possibility of GCA is an ever present worry for all of us here I guess. I hope you are on the road to recovery now.
Yes I also had those symptoms before being diagnosed with GCA. Also swollen neck glands and my head feeling like it weighed a ton, sore throat, ear ache, jaw ache and headache. I thought it was flu. No temperature though.
Just wanted to let you know that I’ve had further ‘occurrences’ of this, 99% at night, just once during the afternoon, when sitting down. It’s quite weird, but appears harmless, so just waiting to see if it stops as I slowly taper pred! If you find anything out about it, please do post it, & hope you’re feeling better now!
Thanks for your input. Sorry to hear that you are having problems. What dose of pred are you on at the moment? As advised, I've been back on 6mg for the last few weeks which has helped a lot with fatigue. I've had only a few episodes of "the shivers" as I call it since, so I think it might be connected to a too quick reduction. Who knows?
I don't know what I would have done without the pmrgcauk forum these last two years. The support and sharing of knowledge has been invaluable.
That’s OK. I promised I’d come back to you if I had more ‘shivers’! Good description! After going down quite quickly, with no flares or great trouble, to 3mg, last August I felt unwell for 3weeks, had extra symptoms & consulted my doctor…I agreed to go back up to 5mg. Down by 0.5mg each month after 2 months at 5mg. I don’t remember when the shivers started, think it was on 4.5mg. But I always have a bad week, sometimes two, when I taper.but then usually I’m OK. I don’t think, for me, it’s the tapering, I think it’s simply the lower level, which may be my adrenals not working!! My doctor warned me that I may be on steroids for long time at a low level. But at the moment I’ve got a new bad hand & arm tremor, a tooth that had five infections in3 years, and spreading osteo arthritis, some inflammatory arthritis & sciatica. I think my whole system is fairly fedup!! I’m having to give up amitryptylline and Tramadol to see if they’re causing the Essential Tremor, so sleep us even worse & pain is worse. I’m only telling you this so you see that there may be other things causing my shivers!! If you find a definite reason for them, other than tapering or adrenals, it would be interesting to know! Take care, & taper slowly! S x
You do have a lot to contend with! I'll let you know if I find out anything useful. Meanwhile, I wish you all the best and hope that better weather on the way can lift the mood a bit.Sue
Oh, thanks…I’m OK…I lost a dear friend this week, just 65 years old, so it’s a bad time, but my health issues are nothing compared to what she had to put up with!! S xx
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