Anyone else have strange neurological symptoms with PMR?

I have experienced the same thing with shaky hands, especially when lifting a tea cup. So annoying to drop things that you have to pick up when you are already feeling stiff! My rheumatologist said it could be due to the prednisone. I just tapered down from 8 mg to 7 mg and noticed a couple of days where I felt slightly unsteady. Someone on this forum mentioned pain and swelling on the side of the foot, and I also had a few instances of that happening.

Yes! This is my third round of PMR each one about 11 years apart. This last one which started a year ago has been more challenging. Possibly because now I am 78 and my body does not have the same vibrant response time as I had before. I am currently on 5 mg of prednisone and had managed to wean down to 3 mg but symptoms returned so went back to 5 mg and pain subsided. The issue with my hands is that the fingers swell and it becomes dactylitis which is basically sausage fingers. I am unable to make a fist and have no strength in my hands. I have also noticed the past four weeks that my calves and knees feel achy and “weak “ and I have to be careful Not to move too quickly in case I topple over. I am generally a healthy and active woman when I don’t have PMR lol! Age is only a number lol. One thing that my Doctor Who really works with me on the holistic blend And pharmaceuticals, has encourage me that sleep is so important in the healing process. So I am taking trazodone at night which enables me to have a really good sleep and I noticed that if I Do not get a restful nights sleep my body is wrecked the next day.

Please remember that PMR is a type of systemic vasculitis. It is always possible that the pain or problems you are having are vascular and not neurological. I went to a Neurologist with what I believed were neurological problems and after extensive tests that showed nothing I finally figured out that the pain was vascular in nature. I am not on steroids for pain management and I still have fathom pains in my head, feet and lower legs which I have finally decided are vascular pains.

When my PMR was active, the neurological symptoms in my arms and hands were one of the most disconcerting symptoms. I experienced numbness and tingling and had difficulty gripping or grasping objects. It resembled carpel tunnel syndrome. Prednisone relieved these symptoms for me.

Very interesting. Thank you all for your comments. Yes my R Dr did mention a while back that PMR is vascular but I was confused by what seem right now like neurological issues. This is such a whacky disease and every day you literally learn something new.

What type of vasculitis

I have not yet seen a vascular specialist. I have an appointment to see one in a few weeks. In reality I doubt there is little they are going to be able to do for me based on my online research.

I would suggest a good initial resource on vasculitis is the Mayo Clinic's site. It is informative but not meant to not meant to replace your medical professional's input. They say that "Treatment focuses on controlling the inflammation and managing any underlying conditions that may be triggering the vasculitis.".

Remember that GCA is a form of vasculitis and large dose steroids is the treatment discipline for GCA.
As for type of vasculitis, I have no idea. I don't even know what the types are.

Here is Mayo Clinic's Vasculitis website - https://www.mayoclinic.org/diseases-conditions/vasculitis/symptoms-causes/syc-20363435

I'm new to this forum but I thank you @sashakay for your post. I was thinking I was going 'mad' as all your symptons are happening to me. Shaking, knees to thighs weakness etc. Possible GCA. I know now I really do feel these things and it's not just in my mind.

Welcome @marg47, It's great to see that you have already connected with @sashakay and @jabrown0407. It can be comforting to know that you are not alone. Giant cell arteritis (GCA) can be serious. Have you discussed your symptoms with your doctor or rheumatologist?

You're right about the toes and feet feeling tingly. I feel it coming on the most as the night is coming, and that funny feeling comes in the feet, almost like it starts at the bottom and is trying to work its way up. For me it isn't the prednisone, I had the funny feet feeling as soon as I was getting the PMR before the prednisone. It's so strange to hear people complaining about symptoms that I notice in myself, but think if I voiced them people would think it was ridiculous or in my mind.