Tingling hands, arm and leg occurrence at 5 mg slow tapering, in my 3rd year since PMR diagnosis.

[waltztherapy]

Has anyone had this experience please?I'm familiar with tingling in my left hand since carpal tunnel surgery some years ago, so when this started in my right hand, I gave it little attention. However the tingling started in my left arm and left leg only yesterday and there is a slight feeling of numbness in the surface of the skin in these areas. This does not appear to have affected my mobility, which is settling nicely into manageable mild PMR pain in my 5th week on 5mg prednisolone. The plan is to drop to 4.5 mg at 6 weeks, staring the next very slow taper regime. I will attempt to consult my GP as soon as surgery opens today. Grateful as always, for any feedback/advice please, on this wonderful go-to PMR/GCA dedicated consultation forum. Many thanks.

[DorsetLady PMRGCAuk volunteer]

. This does not appear to have affected my mobility, which is settling nicely into manageable mild PMR pain in my 5th week on 5mg prednisolone.

To be honest, not sure I would be considering reducing - and what do you mean by manageable mild pain?

Tingling does get mentioned quite frequently - and very often a lack of vitamin B12 or magnesium has been mentioned as has diabetes…so might be worth running those possibilities past GP.

[waltztherapy in reply to DorsetLady]

Thank you DL. Good to read that the tingling is not unusual with PMR and its treatment.

'Manageable mild pain' is my awareness of stiffness in the usual places but it's not intrusive. I am never completely without pain and I accept this. The levels of 'pain'/discomfort are so low that I feel normal again, and often these mild symtoms almost disappear when I drop the dose by half an mg, which I put down as prednisolone pain. The tapering is really slow and this seems to work. I'm always ready to be flexible, of course.

Thankyou so much, much appreciated.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Not unusual but always best to get it checked out.

[Charlie1boy]

Hi,

Have to say that throughout my seven or so years with pmr, I never contemplated a reduction in pred dose if I was aware of any pain symptoms, however low they might have been. To get to zero took a long time, but it was without any flares.

Good luck.

[waltztherapy in reply to Charlie1boy]

Thankyou Charlie boy.Your well managed tapering without flares is enviable. Well done!

I suppose it was my rheumatologist who said 'keep reducing by half an mg every six weeks and take ibuprofen if necessary', but I have used the slower tapering suggestions after 7 mg, and use only paracetamol. It is trial and error for me sometimes. Aftet two successful total hip replacements and pronated ankles 'saved' by prosthetics, I'm grateful that prednisolone helps me to try to keep active.

Your feedback is appreciated, thanks.

[waltztherapy in reply to waltztherapy]

Not prosthetics but orthotics, of course!🤭🙄

[Charlie1boy in reply to waltztherapy]

Hi,

Thanks for your reply. To be honest, I really only followed the advice given on this Forum. Fortunately, my GP was happy for me to be left to myself regarding tapering unless I hit any problems, which I didn’t.

However, I should say that even the “dead slow nearly stop” taper plan needs to be slowed down even more on occasions.

Good luck