Shivery symptom

[Palgeo]

I’m tapering slowly and have reached 4/4.5mg prednisolone daily which I take at about 8am. I was diagnosed in November 2023. November 2024, I had emergency bowel surgery and am recovering well. But, in the evenings, between 6/8 usually, I experience a weird shivery feeling. I’m not cold and I don’t physically shake. The sensation seems to spread smoothly from my middle back and spread out, up and down my body, sometimes only one side, sometimes both. Does this ring any bells with anyone else? Thanks for any suggestions.

[DorsetLady PMRGCAuk volunteer]

I would be think about adrenals stuttering…maybe they are still struggling following bowel surgery even though you are recovering okay.

Have you been tapering since surgery? If so, maybe you have just dipped below Pred dose required. Perhaps return to 4.5mg every day or even 5mg and see if that makes any difference. If it does then stay there for a month or so, if not then you’ll need to think again.

[Palgeo in reply to DorsetLady]

Thank you. This makes good sense. I feel slightly hounded by my gp and rheumy who want me to reduce by whole mg. That's much too scary. I might ask if I can get a blood test to check adrenal function. Thanks again.

[posthinking01 in reply to Palgeo]

Definitely adrenals - I have Addison’s and this is a symptom I personally need more steroid in a situation - also be careful not urinary infection as similar symptom but as timing is around circadian rhythm time I would say adrenal response !

[PMRpro Ambassador]

All been said - I agree with the suggestions so far.

Not sure asking for a basal cortisol will provide much in the way of answers but it would be a start and would show if adrenal function is still low.

[Palgeo in reply to PMRpro]

Many thanks for responding. Such a weird symptom.

[9lives]

hi Palgeo

I’m glad you posted as I’m slowly reducing from 1mg to 3/4 mg using the DSNS ( I took a year to get from 2-1 mg)last year so really slowly!!

and these last few weeks have had similar symptoms. I occasionally get this feeling of like creeping or tingling skin either on my scalp or legs , it’s really weird. Its like if you hear a song that you love and you get goosebumps.

It was interesting and helpful to read the replies you received. I hope things improve for you soon.

I shall take things easy for a bit x

Carole

[Palgeo in reply to 9lives]

It’s the wonderful thing about this group - weird symptoms can suddenly become not so weird. I feel I can talk about it with my gp because it’s a thing! Thank you, people.