Tingling Sensation

[Threerivers]

I was diagnosed with PMR 9 months ago. Started with 15mg Prednisone and now on 3.5mg. However recently began to experience tingling sensation which started with my feet and now moving to legs and arms. Anyone else with a similar experience?

[SheffieldJane]

That was a much, much quicker taper than most of us would recommend. You could try a gentle increase until this symptom settles. It can’t be rushed.

[Threerivers in reply to SheffieldJane]

Thank for this. Neither the specialist or gp have given too much advice on this apart from leaving me to decide when to reduce dosage saying it was all trial and error. In fact the specialist advised me 5mg for 6 weeks, 2.5 for next 6 weeks and then zero. That failed at 2.5 and I had to go back to 5 and now back to 3.5. I’m not sure whether the tingling is a reaction in some way to the pred or because I have reduced my dosage. I’m pretty fit apart from this PMR and nothing has changed for me recently. I may increase the dosage to 5mg to see if the tingling disappears. Thanks again

[HeronNS in reply to Threerivers]

Are you otherwise feeling well on this low dose? How are the PMR symptoms?

[Threerivers in reply to HeronNS]

Yes I’m feeling pretty fit thanks. The PMR symptoms are under control but I know things can go wrong pretty quickly. It’s just this tingling I’m a bit concerned about

[HeronNS in reply to Threerivers]

I think if it's hard to get prompt medical advice you should follow Sheffieldjane's suggestion and up your dose closer to 5 mg. It could be something as simple - and potentially serious - as an early sign of adrenal insufficiency. How is your energy level?

[Threerivers in reply to HeronNS]

Feeling pretty good and the PMR is just about under control, a few twinges in the morning that’s all.

[PMRpro Ambassador in reply to Threerivers]

I would suggest (whatever dose you decide on) that from here you only reduce 0.5mg at a time and preferably once a month. Possibly using one of the slowed tapers.

Is your tingling all the time? I have brief episodes of tingling, a bit like electric shocks, but they tend to be if I am on almost too low a dose. Have you tried 4mg to see how you do with that?

[HeronNS]

This doesn't sound too serious, but tingling can be a sign of an allergic reaction. If you start to develop any other symptoms of possible allergy get in touch with your doctor as soon as you can. It seems unlikely as you've been on pred a few months. Is there anything else new you've added lately?

Oh, and by the way I had a fast taper also but at nine months I think I was still at about 5 or 6 mg. Got to 3 mg at the end of the first year. Then it took a whole year to get to 1.5. Followed by a minor flare and two years hanging around 2-2.5. Finally working down to zero, very slowly. This adventure started in June, 2015 after about 14 months undiagnosed.

[dancersize2]

Early on I had tingling up left arm for about six months. Not all the time but every now and then Later that stopped and the tingling was lower right arm. Next site was my left ankle. Through all this I continued my slow taper from 15 in July 2017 to 6 in Jan 2019. Methotextrate added and I've reduced to 1.5 by March 2020 with no more tingling. I thought I was feeling the reduction in the inflamation in my veins.

[Threerivers]

Thanks a lot for all the people who have responded, it has been a great help to me. The general consensus is that it is to do with the dosage and this makes sense as the tingling came on as I reduced the dose. I will continue as I am at the moment for a couple more weeks to see if the tingling dies down if not I will increase slightly to see if that makes a difference. Take care

[PeachyLife in reply to Threerivers]

Similar experience here. I was recently transiting to 7.5 mg from 8mg (down slowly from 20 in Dec 2018) when I started getting pins-and-needle feelings in my wrists, mostly in the morning, but occasionally through the day. Wrists were where my PMR started back in 2018, then shoulders, back, etc. After about 5 days of this wrist discomfort, I went back up to 8 mg for a few days with no effect, so then to 8.5 mg. At that level the pins-and-needles/tingling reduced to almost nothing. After 3 days I went back to 8.0, and have been there for a week, with some intermittent tingling. Hoping to stay there for a while and have this unpleasant sensation go away, so I can resume tapering at a conservative rate. Discussed over the phone with my GP/Internist, who encouraged me to continue to adjust as I felt necessary, and to call back if I had questions. I was relieved somewhat to find that others have had the paresthesia as well, as I had not read about this effect of tapering previously. Good luck to all of us!

[PMRpro Ambassador in reply to PeachyLife]

It can be a sign of carpal tunnel syndrome which is quite commonly seen in PMR patients - and at higher doses of pred it improves or is hidden but then apears as you reduce.

[RNRN]

I have had tingling in the feet as well. It comes and goes. More like an electric shock. Not pleasant. I keep asking but not getting answers about it. I have been on low dose of 1-3mg for about a year trying to go to zero. Breaking pills in half to go down by 0.5 mg at a time. Seems an issue is that you drop down but problems don't show up for a week or slowly builds if you drop too fast.

[Hidden in reply to RNRN]

I agree re dropping too fast...then you don't know which side was the sweet spot.

The electric shock/tingling could be peripheral neuropathy. I have it in my feet and it used to feel like my big toe on one foot had electricity shooting out of it. It was creeping up my calves in both legs but the left was/is worse. I couldn't bear hot water on them at all. I was dx with on and initially was prescribed duloxetine. This really helped and the tingling reduced by 60 per cent. I have nerve damage further up my back and neck so now take gabapentin which is around 50 percent better for feet rather than 60 and helps back nerve pain too. If it gets worse or bothers you please see the GP...sorry it just pops out...see the GP when the madness eases! See if you can access this.

nhs.uk/conditions/periphera...