Tingling Legs

[Pumpkin5554]

Does anyone else experience tingling/prickly sensations in their legs? I was diagnosed with PMR about 3 years ago and am now on 10mg pred (for about 6 months now). Have been as low as 5mg but it was upped after a flare.

[Celtic PMRGCAuk volunteer]

Pumpkin, I didn't experience tingling/prickly sensations in my legs that you describe but I did experience a couple of bouts where I couldn't stop my toes and feet from twitching.

Tingling in the legs can be a side effect of the steroids, so possibly your long stretch at 10mg is the reason. Although you mention having experienced a flare at 5mgs necessitating the increase in dose, I'm wondering why you haven't reduced any further than 10mgs after as long as 6 months on that dose? Having been 3 years on steroids, if you were lucky enough to reach a dose just above 5mgs quite comfortably, then I would have thought you should be able to get back down to somewhere just above that dose quite easily in much less than 6 months.

If you are someone who had blood tests (ESR and CRP) that showed raised markers of inflammation at diagnosis, then these tests should be repeated periodically to help as a guide, along with your symptoms, as to whether you can try a reduction.

[Pumpkin5554 in reply to Celtic]

Thanks for your reply Celtic. I'm due for my next blood tests shortly. My doctor has suggested lowering but I'm scared of reducing my pred as even at 10mg I still experience slight pain occasionally but this is liveable with.

[Celtic PMRGCAuk volunteer in reply to Pumpkin5554]

Pumpkin, if you are only experiencing "slight pain occasionally", then that should really not be stopping you from trying a reduction. After 3 years on steroids, you should definitely not be staying on 10mg for as long as 6 months without trying a reduction, even a small one. I was never pain-free down through the doses - only a very few lucky people achieve that happy state. I think you should follow your doctor's wise advice - the aim is to find the lowest dose possible that controls the inflammation. So be brave - you won't know 'til you try. Do come back and let us know the results of your blood tests.

[PMRpro Ambassador]

I get sensations like electric shocks down my legs - most peculiar! But it is different from what your describe I think and only happens occassionally.

If you mean like pins and needles type tingling and it is there a lot of the time do ask your doctor. Poor blood supply to the nerves can cause neuropathies.

But as Celtic says - why have you remained at 10mg for so long when you have been lower successfully?

[Pumpkin5554 in reply to PMRpro]

It is like pins and needles and my doctor has done various tests and as yet cannot come up with a diagnosis. The 'tingling' had been there for a lot of the time initially but, though still there, has subsided somewhat. Still a worry though!

[optimist-ok]

Yes! Its a funny sensation that I get quite often for no particular reason. Like you I have had PMR also GCA for 3+ yrs. At the moment I am on 5mg pred but think I might have to increase as I'm getting more head (artery) pains, although not sure whether this is being affected by the jaw pain which I've had since Dec. It seems that 5mg is a sticking point with the steroids, at least with some of us. Maybe phone the Rheumatologist tomorrow.

[piglette]

I get tingling in my legs particularly below the knee. I did not know if it were due to the colder weather and so my blood vessels were contracting. It is not all the time, but I tend to notice it when I am in bed particularly, although it does happen at other times too. I am on 12mg of pred at the moment.

[paah]

I am just coming out of PMR, having had it for nearly 3 years and starting on 60mg's/day and now down to 3mg's/day I spent a lot of time with tingling or what I called frozen legs. No consultant would confirm that it was due to steriods - but just strongly suspected.

Now I am on modest dose to the end of the month the tingling has gone away.

[maria40]

I don't have tingling but right from the beginning of my taking prednisolone -15 yrs ago- I have had an occasional fluttering sensation in my calf muscles. I asked a GP about this ages ago but was more or less told it was imagination. Knowing what I now know through this forum about the attitude of GPs to PMR I take that with a pinch of salt. I still get this sensation from time to time but it isn't painful and I haven't mentioned it since. Hope yours is not too painful.