Slightly Concerned

[Mogberi]

Hi everyone. In September I made a spectacular recovery from quite severe PMR after only two doses of Prednisolone. Having reduced from 15mg to 10mg in just under 2 months I am starting to feel tingling in my feet and hands. Has anyone else felt these symptoms? I still feel pretty good really so may be over thinking this.

[SnazzyD]

Hello. This comes up quite often on the forum and I’m sure some who’ve tingled will reply. However, I would suggest seeing a doc as it is a new symptom that can indicate various things. Do you know what your blood sugar and Vitamin B12 are up to and are you getting enough other B vitamins?

[Mogberi in reply to SnazzyD]

Many thanks. I am due to see the doc soon anyway.

[Blearyeyed]

Has the begun since the cold weather began?

You may be suffering from some circulatory nerve pain , a common side issue when you have a Chronic Condition or sometimes made more noticeable as your dose decreases or a side effect during the use of steroids .

Keeping your hands and feet warm help and doing regular rotating exercises just sitting in a chair help.

Wear good gloves when you go out and compression socks or tights too as these help your circulation and reduce the tingling.

Do some gentle exercises during the day , flexing and stretching the muscles also reduces it.

Taking a magnesium supplement and using zinc and magnesium lotion also reduces it , especially at night.

Potassium and Vit B complex foods like Bananas , leafy greens and mineral Omega 3 oil rich foods like shellfish and oily fish improved it from within.

[Mogberi in reply to Blearyeyed]

Thanks - sounds like a lot of good advice here.

[PMRpro Ambassador]

First of all: you didn't make a spectacular recovery. You were lucky in being a person for whom pred worked very quickly and gave the characteristic reduction in symptoms that is looked for in PMR. The disease process itself is still there, chugging along in the background and the inflammation it creates is being mopped up every day by your dose of pred.

You have also been very lucky to get from 15 to 10mg in 2 months without hitches. This COULD be a sign you are getting close to the lowest dose that works - for the moment at least, you will get lower. But in the earlier stages of PMR the disease activity does tend to appear greater and so you need a bit more pred than you will later on.

I had tingling and hand and foot pain as part of PMR, Are your hands and feet swollen at all?

But as the others say - there are other reasons too.

[Mogberi in reply to PMRpro]

Feet are a bit swollen but hands not. Tingling and numbness mainly in the feet anyway.

[Hidden]

Hi, I have had GCA & PMR, for about two year. About 6-8 months after I started on Pred (80mg) I noticed and complained about "tingling" in my feet and hands... I was told (by GP & Rheumy) that there was NO correlation between Pred, PMR or GCA and that none would cause (tingling & numbness) aka "neuropathy."

It has now been about 18 months, since the "tingling," started, and I have FULL BLOWN neuropathy in both feet! My hands seem to be okay, with just occasional numbness/tingling.

I see a Neurologist every 6 months, but he has yet to give me a diagnosis or underlying cause... He wants only to prescribe Gabapentin, which I am not willing to take.

I hope your tingling is ONLY that, and that it goes away as you reduce the Pred... I would not wish neuropathy, on my worst enemy! Best of luck to you!!!

[Mogberi in reply to Hidden]

I hope not too. although your symptoms sound a bit similar. Thanks for responding.

[SheffieldJane]

I agree with Snazzy that a few more tests are in order. I think you may have been misdiagnosed initially. Good luck! Let us know.

[Mogberi in reply to SheffieldJane]

Don't think I was mis-diagnosed I am vastly better thanks to the pred. I could hardly pull myself out of the bath before, Now I am leaping out like an athlete. Maybe I have just come down too quickly.

[Blearyeyed in reply to Mogberi]

That is possible as we have said many times be a tortoise not a hare if you want to win the race. Now you are at 10mg you may have reached the lowest dose you can cope with for a while just as Pro says , or may need to stretch out your tapers while you get the Nerve Pain under control and only reduce by 0.5mg at a drop , you will see if it was too quick as you start this next tapering phase , 10mg is definitely a sticky plateau point.

The Pred effect can be very quick for some people , especially if PMR is the single condition they have , they have no or only mild side effects to the steroids and their original symptoms ( although terrible while left uncontrolled would after beginning medication be classed by a Doctor as " mild/ moderate").

Coping with different types of pain now for years from various conditions I know that long term pain can start to make things feel subjective , the Pain Chart goes out of the window , what used to be a 10 becomes a 5 , then a new issue comes its a shock , you worry PMR or GCA is back on its way ( or you get a paper cut or stub your toe and because it's a different type of pain it feels like a 10 again,) and if you do start to suffer Neuropathic Pain or Clinical Neuropathy it is disturbing , as it's a new type of pain so feels more intense , and it irritates you and keeps you awake.

I was tried on Carbamezapine , then Garbepentin , now Pregbalin for Multiple Neuralgias , now diagnosed as Fibromyalgia and Neuralgias . Drugs can help but only as part of a package .

It's worth trying the Self Care route first , and then Paracetamol , keep off the Codiene cycle if you can , and warm shower and heat packs or cool pillows under your hands or feet or cool packs depending which temperature works better for you .

Raising your feet on a pillow or towel under the sheets on your side of the bed also relieves it. Keeping you feet elevated when you sit down , even at a desk and having a graduating pillow , beginning the cushioning at shoulder level also helps with lower arm pain.

Plus the other Nutrition tips and exercises I suggested above , nothing will completely solve it , but unless mild with Nerve related Pains you are hardly ever 100% pain free , you aim for 90 !

If Self Care only gets you to 50% and it gets in the way of your sleep or prevents you doing some things it's worth seeing the GP to get more help.

[SheffieldJane in reply to Mogberi]

Good luck whatever it is. If it is PMR, it will still be there.

[Mogberi]

Lots of good info thanks. I was prescribed Garbepentin and Pregbalin at first but they had little effect and were withdrawn after PMR was diagnosed and the pred seemed to solve everything.

[Hidden in reply to Mogberi]

I thought the possible side effects of the Gabapentin and Amitriptyline sounded much worse than the numbness, tingling and pain... 🤷🏻‍♀️

[Stifffingers]

Hi there.

I’m with you on the Tingling . Been on Pred since Sept 18. Glad you mentioned the numbness in your feet . I’ve had this from day 1 . Still get it but intermittently, but only in my left foot. Sometimes I just cannot feel my toes.normally occurs funnily when I get into bed.

Regards

[Mogberi in reply to Stifffingers]

Thanks for this. I am not alone

[Stifffingers in reply to Mogberi]

Not at all . Also get tingly fingers , again left hand only. I Kidd myself that its thePMR trying to escape? Hey maybe that’s true?.

[guitarzan]

Don't let yourself be deceived. Pred. will mask PMR almost completely, I went from not being able to button my shirt and drive to working in the yard in one day. I've tried to force my taper a few times and ended up relapsing. Seems like for me .5 mg monthly worked best. It's been 4.5 years since and i'm on 8 mgs now. As for the tingling it's probably your elevated blood sugar from the pred. Get a glucose meter and check your blood sugar. If you eat a lot of carbs it will elevate it and cause it to spike. I'm diabetic and it (pred) wreaks havoc with my blood sugar.

[Mogberi in reply to guitarzan]

Brilliant. Similar to my experience in terms of physical recovery. I actually felt so elated after taking pred and still do for the most part. Thanks for responding.