Tingling in mouth and face.

[Heinrich7]

Something new past 2 days. Had weaned off prednisone. But stiffness in body returned. Went back on 2 mg P. Seems under control. But now this tingling. Could it be GCA which often accompanies PMR?

[Hidden]

Hi Heinrich7, I am not any form of expert on GCA but hopefully someone will be along who is more knowledgeable. Have you been doing anything out if the ordinary orhad dental issues? I have provided a link for you to look at but some some people with GCA report all kinds of symptoms. And some symptoms not connected to GCA.

uptodate.com/contents/polym...

[Heinrich7 in reply to Hidden]

I do hope I have no more than PMR. Don’t want GCA. Skimmed over link.

No dental issues. Taking B12. Normal vitamins and now taking new herbal supplement to help with depression and immune system. Feel like I have stabilized after going back on 2mg prednisone. Can’t see my Rheumatologist til mid September! Out of country. But new GP hopefully will guide me along.

[Hidden]

P.s. there is a strange way of exploring your jaw/face "pain" etc. "Chewing gum at a rate of 1 chew/second can reproduce the jaw claudication symptom around 2-3 minutes."

ncbi.nlm.nih.gov/m/pubmed/2...

[Heinrich7 in reply to Hidden]

Jaw claudification. Have to check that out. The material on link is complicated.

[Hidden in reply to Heinrich7]

Yes just quoted the chewing bit in the reply because of that.

[PMRpro Ambassador]

What sort of tingling. And where exactly?

[Heinrich7 in reply to PMRpro]

In face, cheeks, chin, eyes and lips. Mouth feels weird.

[DorsetLady PMRGCAuk volunteer]

As others have said, a bit more detailed information might help us help you.

[Heinrich7 in reply to DorsetLady]

Sorry. It’s just something I have not experienced before. Lips feel fat. Tingly face all over even eyes.

[Hidden]

There is such a thing as "burning tongue" syndrome, which is usually associated with an auto-immune condition. Do you feel like you've burned your tongue on hot food? Can't say I've experienced any facial tingling, but have the tongue symptoms for a day or three every week.

[Hidden in reply to Hidden]

I have that too sometimes! Always trying to figure out what I’ve eaten or drank maybe to cause it. Still a mystery!

[Heinrich7 in reply to Hidden]

Still going on. About 3 days now. Feel like my lips are fat. Just weird feeling on face. Even eyes. Oh well. And this too shall pass.

[Anna135]

I had mysterious tingling around my mouth and face, and after having my rheumatologist send me to a neurologist to investigate and having various nerve tests, it finally turned out that it was a symptom of adrenal insufficiency (no thanks at all to the neurologist who was very rude and unhelpful).

I'm seeing an endocrinologist now, to help me get off the last 3mg of prednisone, and the tingling (plus other symptoms I had), have much improved already as my adrenals are starting to wake up again.

[Heinrich7]

Adrenal insufficiency. Do I now have to see neurologist. And a endocrinologist to go off prednisone? Just a funny feeling in face, eyes cheeks and lips. Lips feel swollen. Think I’ll just continue on and try not to worry about it. I’m on the 2 mg prednisone.

How do those with PMR know when it’s gone? PMR that is.

[PMRpro Ambassador in reply to Heinrich7]

Because they are able to reduce the dose of pred they require steadily to a very low dose and finally zero for an extended period of time. No other way.

[SnazzyD]

Sounds like an allergic reaction although a nerve problem could make your lips feel fat or any number of things so a doctor needs to decide where to refer you. This isn’t a normal Pred thing. An endocrinologist can check for properly working adrenals and help you if they are not optimal, so hurrying off 2mg isn’t a good idea. As far as knowing if PMR gone, you don't until you are off Pred for a while.

[Heinrich7]

Okay! Not going off prednisone for looonnng time. And will complain to new GP about lips. Thx so much!