Numbness hands, face and feet

[JuneWalker]

I have had numbness in my hands, face and feet since being diagnosed with GCA in April 2022. Took my last dosage of prednisone on January 8, 2023. Weekly self injections of Actemra since August 2022. My rheumatologist has sent a referral to a neurologist to find out why the numbess is still persisting. Any members experiencing numbness?

[SnazzyD]

Hello and welcome. How was your GCA diagnosed?

[JuneWalker in reply to SnazzyD]

I had classic symptoms of GCA. Temporal pain, jaw claudacation, sore neck and back of head, my CRP was 133.9, brushing my hair caused extreme tenderness to my scalp, double vision.

[PMRpro Ambassador]

Numbness on the face I could have understood but feet an hands - how strange. Was the numbness before pred or after?

[JuneWalker in reply to PMRpro]

The numbness started about 4 weeks after I started prednisone.

[Rosshigh]

Hi I have been on pred for almost 2 years now and after a year have numbness in left side of face but not hands and feet.

GP gave me amytriptyline which has helped a little but waiting on neurologist appt.

[JuneWalker in reply to Rosshigh]

Thanks for the reply, I have an appointment with a neurologist on the 23rd. Hopefully he can figure out the cause of the numbness.

[Broseley]

I get numbness in my right lower leg and foot and sometimes my left upper thigh. I have GCA and PMR. Rheumy just shrugs when I mention it. My physio thought it might be connected with my back, but I think the lower leg issue is caused by my knee. It only occurs if I lie with my knees together or if I stand with my right leg behind my left one and bend my knees (one of my physio exercises). I don't think it is related to pred or PMR as I have had knee problems for a year before PMR was diagnosed.

[Plantingwithfaith]

I have been on prednisone for 9 months and acterma infusions for 6 for GCA and my hands go to sleep often and my right hand loses it’s grip with small motor skills. Just hoping it goes away with the drugs. No face or foot issues though.

[JuneWalker in reply to Plantingwithfaith]

I can relate to the no grip issue. Due to the numbness in my hands I have become a complete clutz. I am forever dropping something as my grip is not good.

[Daughter-Hayley]

Hi June. I am on this forum because my poor mum who is 77 has been struggling with GCA and PMR since summer 2021. She is still tapering her Pred from 60 mg and is currently on 15 mg after some relapse symptoms on 10mg. From the beginning she has had numbness in her fingers and when she starts relapsing badly and cannot raise her arms the numbness in her hands goes much worse. I always felt that her steroids were never high enough in the first place and not all her symptoms were dealt with before the tapering started (including numbness in her fingers) but no one seems to want to prescribe more than 60 mg even though the dosage should be worked out by body weight - I’ve read it should be 0.7mg/kg of body weight which would be approx 72mg as my mum is quite heavy at 103 kg. In her recent relapse she could barely grip anything but since it’s calmed down again due to increasing the dose to 15 mg, her numbness is improving. I have not read of any other cases of numbness in my research but it certainly is a symptom for my mum and for others as proved by this forum. I wish you all the best in your recovery.

[PMRpro Ambassador in reply to Daughter-Hayley]

It isn't really a "by weight" dose - although that allows for a lower dose for very slight patients. It is an approximation of 1mg/kg/day up to a maximum daily dose of 60mg according to this

ncbi.nlm.nih.gov/pmc/articl...

and I have never seen the 0.7mg/kg you mention. However, good doctors go by symptom relief and if the dose they use isn't enough, they use more. In fact, one very good approach is an i.v. pulse therapy of 1000mg/day for 3 days - and studies have found that in the long term starting with that results in a lower cumulative dose overall despite the massive loading at the start. But for most cases without visual symptoms 40mg is plenty - but if there are visual symptoms, there is no upper limit.

Numbness in the hands is often due to carpal tunnel syndrome - which isn't uncommon alongside PMR symptoms and they can be part of GCA. Unfortunately, a lot of doctors appear unable to think laterally and realise that if poor blood flow to the optic nerve leads to loss of sight in GCA, poor blood flow may manifest to other nerves!

[Tahiri]

I have numbness in my fingertips ( they felt as if they were coated in something) , and also in my feet. At one point it was advancing up my legs to the knee. The Dr seemed to be unconcerned, but it’s an unpleasant feeling. I bought a Revitiv machine and do my feet every two days. At first I used it daily, but now that I’m down to 1mg Prednisolone for GCA , I decreased the usage. That, and acupuncture has helped me considerably. I’ve read somewhere that this numbness can be one of the side effects of Prednisolone. ( Peripheral Neuropathy). I hope this reassures you. x

[JuneWalker in reply to Tahiri]

Thank you for your input. Someone also told me the numbness could be caused by the prednisone.

[Seablue22]

I was interested read your post as I had left sided facial numbness for 3 months following the pfizer vaccination in March 2021. It gradually went away with no treatment but I was diagnosed with atypical PMR in August 2022 and wonder if the two are linked?

[PMRpro Ambassador in reply to Seablue22]

With that temporal difference I would be surprised if there was a direct link but you never know, the vaccine could have been the final straw on the mound of insults to the immune system that sent it haywire.

[Seablue22 in reply to PMRpro]

Thank you for your reply, I have been following the posts each day since joining in November but this is the first time I’ve responded. I was diagnosed with atypical PMR after being tested to eliminate sepsis, GCA and cancer. Blood tests at that time showed inflammatory markers of CRP 256 and ESR 123. I have been unable to find much information about atypical PMR and wondered if you could point me in the right direction please.

[DorsetLady PMRGCAuk volunteer in reply to Seablue22]

Here are a couple of rather old articles -

pubmed.ncbi.nlm.nih.gov/231...

onlinelibrary.wiley.com/doi...

This is a bit more modern -

acrabstracts.org/abstract/c...

[PMRpro Ambassador in reply to Seablue22]

Aye, well, there are a lot of people who are told they have atypical PMR by their doctor and when they describe it here - it sounds pretty typical to us! A lot of doctors have a very fixed image of what they think PMR should look like - but it is a very heterogenous disorder and we frequently say that no two patients are alike, We have even had a patient who was told "Just looking at the symptoms you have and the blood results, I'd say you have GCA - but you are only 49 and that is too young". That the guidelines say "over 50" doesn't mean it doesn't happen younger, it means it is more common, more likely after 50. But the youngest confirmed case I know of was a 37 year old male in S Wales - confirmed at autopsy by the pathologist after the guy died of a stroke due to misdiagnosed GCA so absolutely certain.

Describe how you presented and we'll happily comment - and did the doctors tell you their grounds for claiming you were atypical?

[Seablue22 in reply to PMRpro]

Thank you for the links… I have just updated my profile page so there is a bit more info there. I think the main reason for the claim of atypical was because I had the aching pelvic girdle, knees and neck but none of the associated stiffness. I was started on prednisolone which helped the symptoms within a few hours, and was then prescribed MTX as a steroid sparer but it’s had an adverse effect on my liver so that has been stopped. I’m currently on 6mg of prednisolone and my symptoms seem to be under control in spite of the inflammatory markers still being raised.

[PMRpro Ambassador in reply to Seablue22]

Are they very raised? Though piglette always has astronomical levels!! It happens,

[Seablue22 in reply to PMRpro]

CRP is currently 19 and ESR 40

[piglette in reply to Seablue22]

I would be so happy if I could have those results. My last test results were CRP 42 and ESR 90. It seems to me it is a total waste of my time having inflammation blood tests as they just put SATISFACTORY on my notes. They did make a bit of a fuss when my CRP went up to 132 for no apparent reason. My ESR was a mere 117 that time.

[Seablue22 in reply to piglette]

Mine were originally CRP 256 and ESR 123 so I thought they’d be happy with my current results… but they’re not!

[piglette in reply to Seablue22]

Mine were not that high initially, both just over 100, but the rheumatologist got upset that they did not drop down faster. I now just go through the GP.

[Seablue22 in reply to piglette]

I haven’t got a shared care agreement yet so I am under the care of the rheumatology department, which so far has been a positive experience. Mine have taken 5 months to drop to that level but I don’t know whether that’s good or not… this is all still quite new to me!

[piglette in reply to Seablue22]

I have got through four rheumatologists. One was very good but was a junior and seems to have disappeared!

[Seablue22 in reply to piglette]

That’s quite a number! 😆 How long have you had PMR for?

[piglette in reply to Seablue22]

Around six years. My first rheumatologist was pretty bad, but he seemed to take a liking to me and would greet me with a bear hug and kept stroking my legs. I told my GP and she said she had never heard of that before!!

[Seablue22 in reply to piglette]

Ooh, not what you expect when you go for an appointment!

[piglette in reply to Seablue22]

Different though!

[Seablue22 in reply to piglette]

🤣

[mullochs]

I have experienced numbness of feet and tingling lower leg since starting on Pred 20mg. almost a month ago.

[Missus835]

When I first started with what I didn't know was PMR in June 2021, I experienced what was carpel tunnel-like symptoms in my right hand. Started at the thumb and worked it's way around to the middle finger. All became rather stiff and claw-like (picture your hand when you try to make bird shadows on the wall). I lost gripping skills and computer mousing skills. Had to use a splint to straighten the hand out. After diagnosis of PMR in Jan. 2021 and prescribed 20 mg of Prednisone, that resolved. However, complete use of the middle finger did not return. I still squeeze a soft rubber ball for exercise. I am now able to snap all the fingers, but that one stiffens up with impending storms.

[Rachmaninov2 in reply to Missus835]

I have been given simple hand exercises by a hand therapist which I do every day.

[JuneWalker in reply to Missus835]

I am awaiting an appointment for a Nerve Conduction Study to see if they can figure out what is causing the numbess in my face, hands and feet.

[Missus835 in reply to JuneWalker]

Oh my June...you're really going through it m'dear. Hope they get answers sooner later. Take care hun.

[JuneWalker in reply to Missus835]

Thank you my dear. I had a Petscan last week. LVV present below my neck. . My rheumatologist is calling me tomorrow, I have read the Petscan but need answers on course of action. Angiogram CT, Gallbladder ultrasound, audiologist appointments coming up. I should pitch a tent outside the clinics but it is too cold. Cheers.