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

[waltztherapy in reply to Charlie1boy]

Yeah I found that too, even with the DSNS taper, as you say. Wonderful sharing on this forum isn't it.Thankyou all. X

[Charlie1boy in reply to waltztherapy]

👍.

[Bcol in reply to waltztherapy]

Not sure why your Rheumy suggested taking Ibuprofen as its not recommended with Pred, it will also have no effect if your pain is from PMR.

[waltztherapy in reply to Bcol]

I agree with you Bcol, and do not use ibuprofen. Another much younger rheumy on the same team, told me it takes about two weeks for the body to regulate/adjust to the new small drop in the dose, so there is something to be gained from 'toughing it out', which I have done successfully up until now. This is much more difficult at the lower levels. Since around 6 mg, using DLs very slow tapering method, it can still work using only paracetamol, I believe.Thankyou for your input.

[SnazzyD]

I hope you get it checked out to rule out a neurological or cardiovascular event.

Mild PMR that feels manageable can be a sign that inflammation is building up but I guess as long as the pains go as you reduce it’s less of a worry.

[waltztherapy in reply to SnazzyD]

Yes, I have had it checked with the GP and the thought is that it could be Vit B12 and foliate deficiency, blood test on Monday. In the meantime, if I feel weak, faint or can't move my arms, I should go to A&E. I understand there is a possibility of a TIA here. Will wait and see. Speech etc all good. Periods of fatigue alternating with feeling hyper are ever present.Thankyou for flagging up other possibilities.

Life is full of the unexpected isn't it. 😉

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Glad you got good advice… hopefully you will not need to visit A&E - have a restful weekend..

[waltztherapy in reply to DorsetLady]

Thanyou so much DL.I did have a short lived migraine earlier today. So taking your advice making the weekend calmer. Xx

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

That might be easier said than done if you are a sports fan.. 🎾⚽️🏉🏎️…. 😊

[waltztherapy in reply to DorsetLady]

Indeed. A glass of wine might help.Have a relaxing weekend yourself, and everyone.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

A glass of wine always helps….😊

[waltztherapy in reply to DorsetLady]

Sure does 😁

[Koalajane]

I should get your tingling/numbness checked out. It is possible it could be neuropathy

[waltztherapy in reply to Koalajane]

Have done thanks.Good wishes to all.

[waltztherapy in reply to Koalajane]

Have done thanks. Please see above.

Good wishes to all. X

[papadapadoo]

I had tingling in both ankles, messing up my sleep. Then I started low-dose naltrexone and the tingling disappeared. Probably doesn't work for everyone.

[OldGolfer]

Same problem. Diagnosed as TIA twice before someone thought of peripheral neuralgia, common for 80 years old. I’ve been on pred for 4 years now and don’t think PMR was related to this. Who knows!?

[waltztherapy in reply to OldGolfer]

Quite so. 'Tis a puzzelment. I was attributing my tingling symptoms to the previous CTS in my left hand, but not so for the symptoms in my left leg, of course. Glad it wasn't a TIA for you. This is often a consideration for us octogenarians. I hope to continue with my slow tapering regime, and see how it goes. Thanks so much for your feedback and good luck.

[Italybound62]

I had similar situation on my 3rd taper. Left arm into hand. (I’m right handed). It (hands and fingers) continued to get worse at 3mg and then more at 2 mg so went up to 10mg and it went away. never had hand pain before Now back to 4 mg and so far so good. Fingers crossed

[waltztherapy in reply to Italybound62]

Yes fingers crossed for you. Thanks for your feedback, so good to hear how others handle similar surprise symptoms. Much appreciated. Good luck.

[Tiredcat]

Hi waltztherapy, I have had tingling/burning/pain in my legs for two years, at first only when lying on the sofa, but now off and on at any time. I stopped prednisone in April, so don't think it can be related to the batch of pred tablets. I had mentioned it to two doctors who brushed it off, though the doctor I have seen recently has tried to get to the root of the problem. Blood tests showed no VitB deficiency, and nerve tests at the neurology clinic showed it wasnt anything neurological. Her latest guess is that it could be caused by problems in my lower back, pelvis etc. She referred me to the Orthopedic Department, but they have replied to say they are overloaded and can't see me.

I have oseoporosis and osteoarthritis, and my bones from the waist down are a bit of a problem, so I can easily imagine something pressing on nerves. I have done lots of physical work in my life, and various bits and pieces have been given a hard time. My neck, too. I am glad at least that it isn't a degenerative neurological condition.

I'm really interested to hear others experience something similar.

[waltztherapy in reply to Tiredcat]

Thanks for your input.Like you I am interested to hear other's experiences, so glad to hear yours.

It's so helpful in deciding whether to chase a consultation or work with symptoms where possible.

Having done the initial recommended checks, and feeling able to carry on (at variable levels) with my chosen lifestyle, I will continue to work with it. Your feedback is another helpful contribution to some peace of mind, while using the distractions of social and physical activities - a well used method of dealing with arthritic and other types of pain, I believe.

Thanks and good luck to all.