PMR/Pred and neurological symptoms

[Enfin]

My Gp has referred me to a neurologist for numb patches rhs body, tingly numb feet at night and clumsiness. Has anybody come across these symptoms linked to PMR and/or Pred?

[PMRpro Ambassador]

I - and many others - were certainly clumsy with PMR. I also had and have areas of skin that burn or tingle but whether that is the PMR or the pred I have no idea. Pred can cause neuropathy - but so can other things. PMR is an autoimmune vasculitis and that can disturb the blood flow to nerves - and cause problems in the long term.

[Enfin in reply to PMRpro]

Thank you PMRpro ... sounds silly but I don’t think I can face having something else wrong with me .

[PMRpro Ambassador in reply to Enfin]

I and my OH both know exactly where you are coming from. I just blame it all on PMR ...

[SheffieldJane in reply to Enfin]

Courage Enfin! We are getting older, this stuff happens. I can certainly relate to the “ final straw” feeling, it passes though and we play on with the cards we’re dealt. I have burning feet at night and particularly sore heels. I think it’s Psoriasis related. PMR made me misjudge doors and blunder into door frames. Good luck with your tests, I hope it’s all fine. Let us know, 🌸

[Constance13 in reply to Enfin]

If anything else comes you WILL cope, we all do, it just takes a little time to adjust.

Good luck! 🍀🍀

[Enfin in reply to Constance13]

Thank you Constance and Sheffield Jane. My head knows I’ve got through stuff before... my heart wishes I didn’t have to ... guess I’ll have to borrow a couple of phrases I gleaned from time in Wyoming ‘suck it up’ and ‘cowboy up’!

[Hidden in reply to PMRpro]

Hmmm, that's interesting... my GP, Rheumatologist and two Neurologist have all told me that my taking Pred has nothing to do with my Neuropathy. However, they have not uncovered the underlying cause. They are sending me to a Nerve Specialist in London, next month.

[Heather270240]

Hi Enfin. You are not alone with your symptoms. I was admitted to A & E a few months ago with similar symptoms, numbness down left side into feet and into shoulders. Initially thought it was a stroke which was ruled out after tests. I am now referred to a neurologist as hospital said symptoms are as a result of long term Pred. I am on 6mg after 10 years of Pred. My appointment to see neurologist is May!! Good luck.

[Enfin in reply to Heather270240]

Thank you Heather for sharing your experience. I feel like stamping my feet and shouting ‘It’s not fair!’ But then I guess I’m not two any more!

[Heather270240 in reply to Enfin]

Exactly my sentiments.

[Constance13 in reply to Enfin]

Do it! It might make you feel better.😂

[Hidden]

YES! Approx 6 months after I started taking Pred, I started experiencing slight numbness in my hands and feet. Several months later I was sent to a Neurologist... It's now almost two years since my first visit with him and I have full blown, unexplained, Neuropath in both feet! My feet (and legs) are numb, feel ice cold (but are warm to the touch), they ache, and I get, what feels like electrical, shocks going through them... The Neurologist has done numerous test but has not found a cause. I see a Nerve Specialist, in London, in Feb. It all started when I was on 80mg of pred, but I am now down to 10mg. I hope your's does not get worse!!!! It's maddening!

PS - My GP, Rheumatologist and two Neurologist have all told me that my taking Pred has nothing to do with my Neuropathy, but... 🤷🏻‍♀️

[nuigini]

Just a general comment here for many who have responded, which may be of interest.

Over my 6 years (almost) with PMR I have had a lot of the same symptoms described e.g. numbness in my feet, tingling in my legs, painful legs, etc.. Docs blamed it on PMR. I was sure it wasn't, mainly because I had had many of the symptoms for years prior to PMR. Last summer a new, broader minded GP, sent me for further investigations, including a study of the nerves in my legs and a back MRI. Turns out a lot of my problems may be stem from compression of my lumbar spine and herniated discs i.e. normal wear and tear and aging typical of someone in their 70's. I've had lower back problems for decades.

Over the past few months I've undertaken exercises, deemed safe for my particular back problems, to strengthen and support my lower back and improve my posture. I have experiences a noticeable improvement in my legs and my ability to walk.

[rocketman42 in reply to nuigini]

I have similar issues dealing with PMR and spinal stenosis. I'm never certain if it's the PMR or the stenosis that is causing some of my symptoms but since I'm not going to rush into surgery I guess it's academic.

[Jackoh]

Yes I have peripheral neuropathy- started in left foot and then sometime later ( about 15 months ago) I started to have what seemed like an electrical current running up and down the right leg. After about three months the electrical current feeling developed into excruciating pain in the lower calf. The left foot feels like I have a sock on but is not very painful whereas the pain in the right lower calf at night was on a scale of 9/10. At the time I was taking lefludomide which can cause peripheral neuropathy so I liaised with my Consultant Rheumy and I came off the lefludomide.

I suppose I will never know if the lefludomide caused the neuropathy, PMR itself, or the steroids, or something else for that matter but I did see a noticeable increase in pain while on the lefludomide.

I now take Amitriptyline at night to control the pain and just (just!!!) take pred. without a steroid sparer.

[GlynisE]

Clumsiness yes.

Numb patches I had these before prednisone. In fact my upper thigh went completely numb for 24 hours then when the feeling came back it was burning and I was screaming with the pain. My Rheumatologist said it was nerve ending damage.

[Ciar]

Another case of widespread neuropathy here. I began having tingling fingertips a few months before I had full blown symptoms of PMR. (I had some issues in my lower half that could have been PMR, but I have low back nerve damage, so I just don’t know when PMR started). Tingling got gradually more widespread over the 3 years I’ve had PMR. Arms, legs, and backside now half way up my back. I have some pain with it but it’s not too bad. I’ve been tested by my GP and 2 neurologists...I have carpal tunnel, and a cyst compressing a nerve in one ankle, but unknown reason for the rest. I know how you feel about not being able to accept any more new health problems, I keep saying that too. But they just keep coming. 😥