Anyone else have strange neurological symptoms with PMR?

I've had tingling in my face and neck, starting this past summer when I lost peripheral vision in one eye. It is bilateral tingling. All tests for GCA came back negative. With the GCA scare, went back up to 20 mg/day and weaning off of it. I am now down to 1 mg/day and hopefully off it completely in a bit less than a month when I see my rheumatologist. I'm not sure if tingling is due to the PMR or a side effect of the prednisone. When I finally stop the prednisone, will see if the tingling goes away. PMR is complicated disease but then add to the complexity, all of the potential side effects of the medication (especially prednisone) and hard to tell what is root cause of many of the symptoms. Anyone else had tingling in the face and neck?

My eye doctor told me that GCA is one of the few things considered a real eye emergency and that hospital ERs are not equipped to diagnose it - doctors are not well trained to consider it and ER's do not have eye equipment. My ophthalmologist gave me a 24-hour number to call if I even thought I was having symptoms. It cannot wait until morning - you can have permanent blindness from failure to act. As far as I am concerned anyone with PMR should talk with their eye doctor on how to screen for it and manage symptoms. It is rare but can be very serious.

I recently went to a neurologist to have my nerve function tested - I am experiencing nerve damage due to post-Covid problems plus my PMR. My inflammatory numbers were super high post-Covid so I am low dose prednisone. Did not address nerve issues in neck, shoulders, arms and hands so I am now headed to a Pain Mgmt doctor for neck injections. Hopefully that will stop the nerve damage. In the meantime I have been taking vitamin B complex to help my nerves get what they need. I really want off the merry-go-round.

Yes, biopsy done and now on high doses of prednisolone. Thank you for responding.

I"m glad to see someone else has mentioned shaky hands. I don't get tingling or numbness but I have weakness & shakiness sometimes that makes it difficult to lift things. When I pour water in my coffee maker I have to steady my hand sometimes

Essential tremor, which I have, becomes worse with prednisone. However, I find the biggest factor is how much sleep I get. If I get 7+ hours of good sleep, the tremor is barely there.

Vitamin B6 supplements are known to cause peripheral neuropathy, so much so that a mandatory warning on vitamin B6 supplements is now required in Australia. Check your B complex to make sure there is no B6 in it.

I had very high levels of B6 and my blood test result came with a warning that I was at high risk of developing peripheral neuropathy. The excessive dosing came from B6 added to a magnesium supplement I was taking daily.

The Australian government Therapeutic Goods Administration warns:
"Many people are not aware that vitamin B6 can cause peripheral neuropathy, which results in tingling, burning or numbness usually in the hands and feet. Taking vitamin B6 even at low doses can cause peripheral neuropathy..."
https://www.tga.gov.au/news/safety-alerts/health-supplements-containing-vitamin-b6-can-cause-peripheral-neuropathy

Hi @megz, Thanks for the link. There is also another discussion on the topic if you haven't already seen it.
--- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

I frequently get vibration in my feet, Vibration like sitting in the car with the engine idling. There were many times when I have wondered if I am imagining things but I came to the conclusion I wasn't. It doesn't help that doctors for decades dismissed these symptoms as my imagination, but that was before this flare up happened. Then I was referred to a Rheumatologist.

My hands have become shaky, but my entire body also feels as if I’m shivering from the cold, although I’m not cold nor can you physically see the feeling of shakes. Seems to start late afternoon/evening

Anyone have similar experience?