Persistent numbness: I wonder if anyone can help as... - PMRGCAuk

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Persistent numbness

Emmylou3 profile image

I wonder if anyone can help as to why the sole of my left foot has been numb for nearly 4 months. Have more or less weaned myself off pred but still on methx. No one seems to be able to diagnose this. Not diabetes, been Xrayed, not B12 deficiency. No inflammatory markers , no injuries ?? Stops me walking, painful if I try more than half a mile. Would appreciate any thoughts.

128 Replies

I have exactly the same problem and it also goes up my lower legs. It feels like I have leather soles on my feet. I think it is a neuropathy. It was definitely the pred that caused it. I have a strong suspicion it is a problem that does not go away. I assume you are not diabetic.

Emmylou3 profile image
Emmylou3 in reply to piglette

Oh dear, thank you. I was hoping it might resolve in time but there has been no difference since day 1, despite orthotics, exercises, medical investigation. Latest will be an electrical nerve test of some kind. I'll let you know if it improves things! No, I am not diabetic.

piglette profile image
piglette in reply to Emmylou3

I would really love to know if there is anything that can be done. I would really appreciate any feedback.

Emmylou3 profile image
Emmylou3 in reply to piglette

Yes, absolutely. As yetI have no clue but acupuncture appears on the NHS site! I would always ask the medics before trying it, but I definitely will if nothing else is offered.

piglette profile image
piglette in reply to Emmylou3

I tried acupuncture a couple of times. In my case it had no effect. It will be interesting to see how you get on.

Helipad profile image
Helipad in reply to Emmylou3

I’ve just had the electrical nerve test and it didn’t really find anything, that is what I was told, though the neurologist didn’t talk to me at all and rheumatology just brushed it off and intimated it was more an age thing which of course is rubbish.

My feet feel numb, tight and painful, it’s a burning sensation, and I also get tingling in my feet and legs. I’m now finding it difficult to walk or stand. I have been thinking that mine is possibly peripheral neuropathy. I have RD and have been taking Pred. and Methotrexate.

This sounds really difficult for you. I am sorry, but I don't know RD: rheumatoid? It sounds,as though your doctor should be consulted as soon as it can be arranged. I do hope he or she can offer some relief.

Thank you for your kind words Emmylou. It’s Rheumatoid Disease, I have spoken to my GP and he has prescribed some painkillers.

It can be very painful at nights in my case, numb, tight and painful, but no tingling as such.

I’m sorry you are suffering too, it’s horrible. I find it eases when I have been in bed for a while but as soon as I get up and start walking about it starts again. How long have you had the problem?

I reckon about eighteen months. I think it suddenly arrived. It was just suddenly there.

That’s a long time, it’s only been about a couple of months for me. Are the tops of your feet affected too?

Round the edges of my foot and underneath feel numb, but it can becquite oainful if anything knocks my legs.

Viv54 profile image
Viv54 in reply to Rachmaninov2

Hi, i have exactly the same symptoms, after visiting a consultant thats what i have. It drives me mad, mostly at night !

Rachmaninov2 profile image
Rachmaninov2 in reply to Viv54

Hello Viv, sorry you are suffering too. Did you see a consultant Neurologist?

I have had this ‘painful numbness’ and heavy legs for about 3years and before PMR/steroids but now worse and walking etc difficult to. Have had NHS hand rail on stairs to aid. I am seeing a rheumatologist privately tomorrow (one recommended as knowledgeable on PMR) to find some answers or what is the prognosis. It’s horrible! Bed early evening the only place where some respite…but not much. It’s there all the time. My long suffering and supportive husband.

I’m sorry you’ve got this horrible thing too Pmrmolly, three years is a long time. I hope the rheumatologist can help you, please let us know how you get on. It’s the same for me, I can’t wait to get to bed for some respite. Although last night the pain in my feet took longer to ease and my hands were really painful too, so it was some time before I went to sleep. I am beginning to feel depressed because of the pain and gradually being unable to very much because I need to sit down. It’s good that your husband is supportive, although it must be difficult for him.

Just check out Fibromyalgia!!! 😘 took 6 years to diagnose me! And god knows How many hospitals!!

At the very beginning before I was diagnosed with Rheumatoid Disease by the rheumatologist my GP said that it might be Fibromyalgia. Glad you’ve finally been diagnosed Poskit, sorry it took so long.

Thanx. Fibromyalgia IS very Complex and HARD to diagnose cos there's NO test available. The amount of symptoms really is unbelievable?! For all the different parts of your body it can affect!! Well worth looking into though for any of you who haven't had any answers! Good Luck everyone 😘

PMRpro profile image
PMRproAmbassador in reply to Poskit16k

There is a fundamental difference between fibro and PMR: PMR is an inflammatory condition and, as such, responds to corticosteroids which are the most powerful antiinflammatories in common use. Fibro is NOT inflammatory so never comes with raised inflammatory markers and does not respond to steroid management.

Successful and informative visit to consultant. Very possible ‘heavy swollen legs’ due to 20 years use of nifedipine blood pressure pills! Those have been STOPPED and replaced with Losartan.

He listened, made some sensible recommendations and change of medicine regime. He said there are plenty of tools the box to deal with these problems; he gave me HOPE!! I am seeing him again in two weeks.

P.s, I did provide him with full blood tests, DEXA scan and Dopla test details provided by my GP so he had lots of info before the meeting. My bone density is that if a 30 year old!! …..that is after 3 years on steroids…….all very positive.

I’m glad your appointment with the consultant went well, and you now feel that you have some control over the situation. I hope your next appointment is as successful.

It’s essential that we have hope. 🙂

PMRpro profile image
PMRproAmbassador in reply to Pmrmolly2018

Sounds sensible.

Given that bloating of various parts of the body including legs and feet is an adverse effects that should be reported immediately to the doctor - why do doctors ignore it for so long? It is the same with amlodipine - but in the UK they persist in using the calcium channel blockers first line and ignore the fact patients so often have problems with them. Anyone would think they were the only option!

Rachmaninov2 profile image
Rachmaninov2 in reply to PMRpro

My feet were badly swollen when I was taking Amlodipine and Ramipril so I stopped taking them. I then became ill due to high blood pressure and I was given Amlodipine again. I’m still taking them and my feet had been swollen until recently.

PMRpro profile image
PMRproAmbassador in reply to Rachmaninov2

That's what I mean - it is not necessary, there are other drugs.

Rachmaninov2 profile image
Rachmaninov2 in reply to PMRpro

Yes PMRpro, just to illustrate your point. 🙂

Helipad profile image
Helipad in reply to Rachmaninov2

Like you I get the tingling and the burning plus it really aggravates my CRPS and makes my ankle swell. My doctor put me on Duloxotine, along with the Amitriptyline and Tramadol I was already taking and this has helped with the burning and tingling a little bit. It just seems to be one thing after another and it really does get you down. My bed is my little safe haven as there is a slightly better chance of getting comfortable.

Rachmaninov2 profile image
Rachmaninov2 in reply to Helipad

Did your doctor examine your feet Helipad?

Another thing I have is that the veins on the top s of my feet have become very pronounced, do you have this?

Yes—- huge veins all over feet and legs!

I’m wondering if my symptoms may be neurological and vascular, vasculitic neuropathy, but my knowledge is limited. I wish I could get a face to face appointment with my GP so he could refer me to an appropriate consultant.

I had my varicose veins removed 20 years ago from my left leg—— since Pred they have come back with a vengeance! Horrid ugly things!

Sorry to hear that Smokeygirl. I have Rheumatoid Disease not PMR but have also been taking Pred. Are you tapering?

Oh yes—- very very slowly. Down to 6.5 mg at the moment after two years. Staying put for the moment until my chest infection clears up!

I guess at 79 I’m too old to have them stripped again! Although I believe you can have them injected, I think mine are too bad!

Ohh vanity! 🤣

I’m reducing and down to 7mg, just wondering if taking less could make our symptoms better or worse.

PMRpro profile image
PMRproAmbassador in reply to Rachmaninov2

Only one way to find out!!!!

My uncertainty is because I have read that as well as helping with inflammation Pred. can also cause neuropathy.

PMRpro profile image
PMRproAmbassador in reply to Rachmaninov2

Still only one way to find out!

Rachmaninov2 profile image
Rachmaninov2 in reply to PMRpro

Yes I see your point PMRpro, thank you.

We have no choice!

in reply to Rachmaninov2

100% correct. Steroids are nasty! Miracle drug but UNAVOIDABLE side effects. If Steroids were the "it" there would be NO Biologics or continued research to find help for "us" inflammation sufferers.

Rachmaninov2 profile image
Rachmaninov2 in reply to

In my case it seems that its “Damned if you do and damned if you don’t”.

in reply to Rachmaninov2

Awe, I feel so bad for you. I will keep you in my prayers to find success in your journey. It's tough for any of us, thus why we are all hear...hope.

Rachmaninov2 profile image
Rachmaninov2 in reply to

You’re right, it is difficult for all of us. We’re fortunate to have great support from these forums. Thank you for your kind words, my best wishes to you. 🙂

in reply to Rachmaninov2

Heart-felt prayers for ALL of us going through this! It just sucks! GOOD luck. I'm sure we will talk again but in either case, hang in there. I honestly believe your issue WILL improve after trial and error or who knows, maybe you will just wake up one morning and surprise, you're better! I hope and pray!

Rachmaninov2 profile image
Rachmaninov2 in reply to

Thank you. 🙂👍

Helipad profile image
Helipad in reply to Rachmaninov2

I have only developed neuropathy when I had reduced my Pred down to about 7.5 which was just a couple of months ago and I’m now down to 2.5. They have decided to take me off Leflunomide and see if that helps, not holding my breath on that one though. My doctor did examine my feet, though neither the neurologist or the rheumatologist bothered too. It just seems to be one big vicious circle, we have to take these drugs to help get these conditions under control, in my case it’s GCA, but then we end up with something else due to the medications. My list just seems to be expanding rapidly.

PMRpro profile image
PMRproAmbassador in reply to Helipad

It is a well-known adverse effect of leflunomide - happened to a friend who tried it. Brilliant for the PMR but she did stop it. Went back on - I assume the neuropathy is tolerable this time.

piglette profile image
piglette in reply to Smokeygirl

You can have laser treatment or radiofrequency ablation to remove them, they block them somehow so they shrivel away. I think they may do it on the NHS now. It is walk in walk out type surgery.

I managed to book a face to face appointment albeit three weeks from the date of the call. It's challenging but maybe persist. Squeaky wheels get oil....Good luck

That’s an achievement! Were you asked to send photos of your feet to your GP?

Nope! How would that help??

I thought that it might have helped to get the face to face appointment if they saw a photo. When I first had a rash I was asked to send a photo which resulted in a face to face appointment.

Sciatica?? I've had it Constantly for over 21 years in my Right leg. It actually started in my knee! I had a tight calf muscle for a couple of days. Thought I'd over done the step class n swimming. I was a keep fit fanatic at the time!🙄 and eversince that day I've pract been a couch 🥔!🙄😫I had physio on my knee for almost 6 weeks. It was only by chance that a change of physiotherapist that found out what the problem was!

I had acupuncture/ injections even a partial disctectomy and nerve decompression on my L3/4. When I started with it also in my left leg a few years ago! But the L5 S1 which was the start of it all hasn't been touched at all! The consultant says it's too risky and the prolapse isn't That bad! Eventhough I can barely walk with it! I have constant numbness/tingling/burning and weird sensations down both legs All of the time!! I used to suffer with Cramp Alot!but found some tablets on Amazon that have made such a difference to it!

I know exactly what you're going through! You might be aswell getting your spine checked out? When that physio checked mine I was fine till she touched my L5 S1! Then I nearly hit the roof!!

Good Luck 👍Oh I was diagnosed with Fibromyalgia and Benign Joint Hypermobility Syndrome. And recently Osteopenia. Never give up looking for answers!!😘

Yes I’ve had sciatica for years, I hadn’t considered that! I also have scoliosis and osteoarthritis. I agree, I’m doing all I can to find out what’s wrong. We do have a lot to deal with don’t we. Good job you had that change of physiotherapist. Many thanks for all the info. and your good wishes, good luck to you too. 🙂👍

Tahiri profile image
Tahiri in reply to piglette

I have had identical symptoms where the numbness began in my left foot and spread up to my knees , even with the reduction in Prednisolone. Spraying weekly with Magnesium oil helps tremendously, with the addition of a machine called Revitiv ( advertised frequently on tv just now ) .I used it for 30 minutes each day at the 50 power mode , and now use it every second day. The numb feeling in the arches of my feet has not completely gone - but is much better. My spelling of the name is dubious ( may be Revitive). Eamon Holmes and Ruth from the TV show are advertising it currently. I think it cost about £150 around 6 months ago but you can claim the V.A.T. back if you’re disabled.I hope this helps you as it’s an extremely unpleasant feeling.Best wishes, Tahiri. Forgot to mention acupuncture didn’t help at all.

piglette profile image
piglette in reply to Tahiri

I have one of those foot machines. It has got pushed to the back of a cupboard as I had lost the zapper thing. Perhaps I should drag it out and see if I can get a zapper. It was quite pricey, so I should really try it again. Acupuncture did not help me at all either.

Tahiri profile image
Tahiri in reply to piglette

I’m pretty sure that the shop would sell you one. Their telephone number is on their advert in the back pages of the ‘DAILY RECORD’ or a similar tabloid.

piglette profile image
piglette in reply to Tahiri

I don’t think mine is the Eamon Holmes one. It was something I saw in Readers’ Digest a while back. I am sure I can find a zapper though.

Smokeygirl profile image
Smokeygirl in reply to piglette

Oooh I’ve got one too——was my diabetic sons—- it’s in the garage! I too have now got pain on the heel/ sole of my left foot. It cleared while I spent the fist week of my chest infection in bed but has now returned. I shall dig out the foot machine—- brilliant idea!

Smokeygirl profile image
Smokeygirl in reply to Tahiri

Does the magnesium spray affect your stomach? I can’t take magnesium supplements. xxx

PMRpro profile image
PMRproAmbassador in reply to Smokeygirl

Does it give you the runs? You could try a different salt - ordinary magnesium supplements have a laxative effect for me but the one I use here doesn't (mag pidolate but it isn't available in the UK as far as we can tell). The sprays/oils and Epsom salts as foot baths shouldn't be a problem though

Smokeygirl profile image
Smokeygirl in reply to PMRpro

Yes, the runs! Thanks PRO I shall try the Mag spray!

PMRpro profile image
PMRproAmbassador in reply to Smokeygirl

Take little and more often

Smokeygirl profile image
Smokeygirl in reply to PMRpro

Thank you! X

Tahiri profile image
Tahiri in reply to Smokeygirl

The magnesium spray completely bypasses the liver. I find it really helpful with the unpleasant numb feeling which was even spreading to my fingertips, as though they were coated with wax. I personally feel that reducing my Prednisolone has been the cause. I’m now at 4.5 mg for GCA reducing by half an mg every 6 weeks. The magnesium spray and the Revitive machine have helped tremendously so far. The Dr completely ignored my complaint of neuropathy. Sometimes I think that they really don’t know. Fatigue is my main problem now , but I suppose it’s a side effect of the reduction too. ( Adrenals ) ? On the plus side my hair loss has ceased , and it has become really thick again and uncharacteristically curly. xx

cycli profile image
cycli in reply to piglette

I have exactly the same piglette. I was hoping that as the gunk cleared from my muscles it would improve. I have had it for over a year and it is still much the same. It affects the way I interpret whether I am stable or not as lack of feeling in feet impacts on balance. Mssage to lower legs and sole of feet helps but numbness is still there. Whether PMR related or completely separate issue no idea.

PMRpro profile image
PMRproAmbassador in reply to cycli

Have you been monitored forraised blood sugars while on pred? You should have an Hba1c blood test done at least every 6 months, preferably 3 months.

cycli profile image
cycli in reply to PMRpro

Expecting results from urine sample tomorrow and bloods also. I have had this numbness before taking pred or being diagnosed. It was something I raised with the doctor early on but so much else was needing looking into it was just overlooked. I have just read up about it but there is very little to go on apart from it should be taken seriously. I don't have pain with it just the numbness.

cycli profile image
cycli in reply to PMRpro

not had blood for raised sugar

PMRpro profile image
PMRproAmbassador in reply to cycli

Doesn't need to be a blood sugar level - the Hba1c is a better indicator that averages out levels and means spikes caused by pred releasing glucose from body stores are taken into account both ways

cycli profile image
cycli in reply to PMRpro

are raised blood sugar levels related to numbness then PMRpro? I had this before any diag. so I think it may be related to GCA or PMR but not sugar as that was normal .

PMRpro profile image
PMRproAmbassador in reply to cycli

Raised blood sugar levels can lead to neuropathy but if you already had it before pred they may be another cause - and it still needs investigating. If the blood sugar checks were just random BS checks they may not show everything,

cycli profile image
cycli in reply to PMRpro

thankyou. I've now adopted this AAA.......Accept-Assess-Adapt. It seems that with every turn there is new knowledge and a need to work out how to modify ones previous assumptions. Before this I just relied on my body reacting and adjusting. I now have to understand what is happening and then work out the best way of coping. I would like to say overcoming but that doesn't seem on the cards. It feels like unpeeling an onion where there are layer after layer of things to be revealed. Intellectually I am excited to be discovering how my body functions. Emotionally and practically I am devastated at the wreckage of what I took for granted.

cycli profile image
cycli in reply to PMRpro

see entry below. face to face with doc. to look at the numbness separately on 23rd august so that's good. Also noticed skin drying on hands unlike me, and bruising easily. Was told bruising a consequence of pred. Also on 10mg Apixaban for control of blood clotting. Recently had full blown PE both lungs and they are concerned it is genetic so probably on for life. Asked to reduce to 5mg but was insistent that risk of another could permanently scar lungs and definitely end my hopes ever of returning to cycling. I've been lucky so far. Don't want to push my luck.

PMRpro profile image
PMRproAmbassador in reply to cycli

A mix of pred and apixaban is almost certain to lead to bruising.

piglette profile image
piglette in reply to cycli

I am quite unstable when I walk too. My HbA1c is 39 so in the normal range. I think it is a form of neuropathy as a friend who has had chemo has a similar problem.

cycli profile image
cycli in reply to piglette

just had consultation. Hba1c 44 so slightly raised...said should be 42 or less so will watch sugar. No sugar in urine so good. Inflammation CRP down dramatically from 71 2 wks ago to 30. sedimentation from 15 up to 28 so mixed message there. Another blood test 23rd August. Staying on 40mg until then and will discuss reduction thereon. Have felt quite good fatigue wise last 2 days so looks like the 40mg is finally suppressing the disease. Going to continue as I have been doing recently and hope the improvement is sustained. Feeling positive.

PMRpro profile image
PMRproAmbassador in reply to cycli

I'd look at all carbs with an Hba1c that is already raised - you can't control what the pred is doing to your blood sugars but you can help a lot by cutting carbs,

cycli profile image
cycli in reply to PMRpro

good advice. I know how to control that at least. I've noticed a craving for sugar recently and that's unusual for me.

PMRpro profile image
PMRproAmbassador in reply to cycli

Pred makes the liver release spikes of glucose from the body stores. That in turn triggers release of insulin - but because it isn't for a full meal, the sugar level plunged too far. That then triggers you to crave something sweet to bring it back up. Rinse and repeat ... Take the sugar and simple carbs out of the equation and it SHOULD improve that side of it.

cycli profile image
cycli in reply to PMRpro

thank you

cycli profile image
cycli in reply to PMRpro

Just had consultation on numbness and tingling. It seems my folate level is down, could be because of PMR/GCA and she has put me on a 3month course of folic acid tablets to boost the nerve regeneration or some such. It also improves the generation of red blood cells apparently. I hope this helps and will report any improvement. Has anyone else with this numbness/tingling shown lowered folate levels in the blood tests?

PMRpro profile image
PMRproAmbassador in reply to cycli

I think if you want responses to that you probably need to start a new thread - few people will see it here.

cycli profile image
cycli in reply to PMRpro

okay.

I replied to piglette in error, instead of to you. Apologies- I’m not very good with computers

I have a numb left foot mainly the sole. My doctor diagnosed a damaged nerve in my lower spine. The pain shoots down the back of my leg too. However I may get a scan soon as it is disabling. I was given amitriptyline which has helped significantly at night as well as taking co coadamol. Good luck.

PMRpro profile image
PMRproAmbassador in reply to ellarowan

Mmm - but i the spine and bones trapping the nerve - or is it low back muscles doing it? The sciatic nerve passes through the piriformis nuscles and if that is in spasm it can do the same. Lot easier to deal with too - no surgery required.

in reply to ellarowan

I feel bad for anyone with this! Back pain affects so MANY nerves it's crazy. As far as I know, FEET, legs, arms ALL! I also know, a simple pinched nerve in the back or even neck can affect the feet. When I was studying to be a Physician this was one of the "unknown" territories" that could be diagnosed differently in each individual. We all are very unique. We have the same parts, blood but we are and must remember "individual".

I have the same problem in both feet and have been diagnosed with neuropathy but no one can tell me why or what to do about it. Both of my feet also feel like something is rucked up between my toes and the ball of my foot, it’s horrible and drives me up the wall.

Rachmaninov2 profile image
Rachmaninov2 in reply to Helipad

Did a Neurologist diagnose the condition, and hasn’t anyone suggested any treatment?

Helipad profile image
Helipad in reply to Rachmaninov2

The neurologist didn’t diagnose anything that I am aware of but then I’ve not had access to the report and the rheumatologist, when I asked if there was anything I could do, just pretty much said no.

Rachmaninov2 profile image
Rachmaninov2 in reply to Helipad

I think when you have a consultation a report is sent to the GP, I received a copy of the letter a dermatologist sent to my GP. Maybe you could ask your GP if he/she has received a report and if so would they send you a copy. 🙂

Helipad profile image
Helipad in reply to Rachmaninov2

I did ask the neurologist to send a copy to my GP and she said no she wouldn’t. I have access to my medical records at my GPs so do get to see any letters they receive plus any info following consultations.

PMRpro profile image
PMRproAmbassador in reply to Helipad

Did she say WHY she wouldn't? It is normal practice.

Helipad profile image
Helipad in reply to PMRpro

She said very little, she didn’t even introduce herself, I did ring the receptionist and asked her and she said she wasn’t allowed to without the doctors permission. When my GP is back from leave I’m going to ask her if she can’t get a copy of the report.

PMRpro profile image
PMRproAmbassador in reply to Helipad

How rude. NOT part of training these days ...

Helipad profile image
Helipad in reply to PMRpro

Very rude indeed. I have just received a copy of a letter that my rheumatologist has sent to my GP surgery and according to the letter I have mild distal sensory motor neuropathy, axonal type. Don’t actually have a clue what that means as he pretty much told me they didn’t really find anything.

Rachmaninov2 profile image
Rachmaninov2 in reply to Helipad

At least you know now. 🙂

PMRpro profile image
PMRproAmbassador in reply to Helipad

It is the sort of neuropathy that develops in diabetics although there are a few other causes of it.

Helipad profile image
Helipad in reply to PMRpro

Interesting as I don’t have diabetes, I’ll have to look and see if I can find out other causes.

PMRpro profile image
PMRproAmbassador in reply to Helipad

I assume poor blood flow would do it. Loads of options listed here:

medlineplus.gov/ency/articl....

including autoimmune disease

Helipad profile image
Helipad in reply to PMRpro

Thank you for that, I’ll check it out

Rachmaninov2 profile image
Rachmaninov2 in reply to Helipad

I’ve just seen that there is a Neuropathy Support forum on HU. I am going to join in the hope that I will find some useful info.

Helipad profile image
Helipad in reply to Rachmaninov2

Think I will have to join this as well

Rachmaninov2 profile image
Rachmaninov2 in reply to Helipad

You’ve nothing to lose and you may gain some useful info. 🙂

Smokeygirl profile image
Smokeygirl in reply to Helipad

Might be Morton’s Neuroma. I find it eases if you stretch your big toe pulling hard with your hand , right out and away from the rest of the toes for a minute or two every day xx

Have you had an MRI of your spine Emmylou3? I had a numb big toe. Neurological exam showed I couldn’t push up with it. MRI showed degeneration and pinched nerve. Surgery was successful for that and some of my back pain.

No, I haven't to my knowledge. My rheumy did explore the possibility that it was a kind of referred pain such as folk mention but didn't seem to think it was. Anyway, I am going to a musculo skeletal unit next week and I hope they will have some accurate insight. Thank you so much to everyone who has replied, you are all so helpful, and as usual I realise there are people struggling with a worse situation. At least my foot doesn't play me up at night, though bed is certainly the most comfortable place. Blessings to all.

Sorry to hear about your numbness in your feet, very painful at times. I also have numbness/tingling in both feet mainly in the toes and balls of feet and it started to develop after being on Pred for 6 months for GCA at quite high doses (60-30mg during that time). It has now stabilised, I think, now I am at 18mg Pred. Rheumatologist did not think it had anything to do with Pred or the GCA, but it is a big coincidence. GP arranged for me to see a neurologist and had electrical tests on the foot nerves and reported there was a slightly slower response which could be causing the numbness/tingling feelings but offered no cause or treatment. I am not diabetic, no thyroid issues and B12 levels OK. Just got to live with it and hope it does not get any worse. Another side effect Pred takers have to deal with with!!

Helipad profile image
Helipad in reply to Alpineflower

That’s pretty much what I’ve been told as well but mine didn’t start until I had got to a much lower dose of Pred along with 10mg of Leflunomide a day. My Rheumatologist even said it was to do with my age

Did you see a Podiatrist? There are MANY factors of which could be the cause. It could be your back! If you have Arthritis in the spine or one of your L4/L5. Another issue could be Plantar Fascitius as it can affect several nerves/areas in the feet but a Podiatrist would diagnose you with this. I would also go see a Physical Therapist as they give you exercises for this issue. Honestly, it has affected me in the past, and was completely relieved after therapy. I also have prescription shoe molds to support my feet. My husband suffers from numbness in both feet, but he's had several surgeries on his back, resulting in permanent nerve damage. He was told to take vitamin B6 daily, Tumeric (the actual root from a health food store), Baclofen (muscle relaxant), and he gets relief from a Chiropractor. Wishing you relief soon.

Just to share my experience. My right foot has been numb for several years and I saw a physiotherapist who told me it was most likely due to my lumbar spine L4 and L5 being misaligned. I was prescribed exercises and was told it would improve and maybe get better. It has improved but there is still some numbness in there. My spine has improved at least so maybe it's something in my foot that now needs work?Nasty problem - good luck.

I have numbness and tingling in both feet! It started about four months again for me - about a year after starting Pred. So far no diagnosis. Doc did mentioned that after taking B12 for several months if it didn’t resolve he would send me for a nerve conduction test. We shall see. Keep us posted please. Nice to know I’m not the only One.

gca5 profile image
gca5 in reply to kimsaunsc

numbness and tingling are different: numbness - can't feel it, tingling - can feel it.

PMRpro profile image
PMRproAmbassador in reply to gca5

Yes - but it is perfectly possible to have both at the same time

Rachmaninov2 profile image
Rachmaninov2 in reply to gca5

I have both at the same time.

It is exactly a year since I started taking Pred & Methotrexate and have had numbness and pins & needles in both feet recently and never before. . Metho. has caused me so many problems and I have just had enough, so have told Rheumy I am stopping it. Friend with neuropathy finds relief from spray of Vit B12.

I have posted a Mayo Clinic study that shows PMR can affect lower extremities. And if you look at the description of the symptoms for the ailments listed, it includes numbness and tingling. If you read the article and the definitions of disorders listed that includes arms, legs, feet and hands. I don’t think most doctors are up on the current research. Inflammation can cause many issues and autoimmune disorders are not easily diagnosed. Also it is listed as a side effect of prednisone. I have experienced the same problem for about 10 months now.

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PMRpro profile image
PMRproAmbassador in reply to exanastasis

Thank you - I haven't seen that before, very useful.

Nerves that are damaged by pred or other glutacosteroids (axons) go to "sleep" for about a month before they begin to repair themselves at a rate of 1 mm per day. I went off pred n January and my numbness in hands and feet are greatly improved but not gone. Since an axon can be 1000mm long, and there's no telling how much, or how many, have been damaged, it may take many months to several years before you feel sensations in the same way. But you will improve.

Here1am profile image
Here1am in reply to schmuppy

Thank you! That is encouraging. I can handle slow.

Emmylou3 profile image
Emmylou3 in reply to schmuppy

Yes, thank you, that gives me some hope. But I suppose if I have to take a long term maintenance dose of pred, it might not get better. I am coming round to thinking, based on the number of responses received, that pred is the culprit in my foot numbness.

Emmylou3 I don't think it is the prednisolone. I have this and I had it long before i took any steroid. I had it in my right arm and hand also but that has almost completely cleared. I think it is connected to the muscle condition which PMR causes. Locked muscle and poor blood supply are contributory factors. Mine is very slowly improving now the steroid has released the muscle to work. You need to massage the muscle daily. It will take months so be patient. I think the nerves take a very long time to recover and if they have been starved of supply for a long time maybe they can't recover. Keep trying

Emmylou3 profile image
Emmylou3 in reply to cycli

Thank you, Cycli. I guess time will tell. I have to say I never had the problem before being on pred for a year, but, I was significantly weaning myself off pred at the time the numbness suddenly happened. Then I had to go back on a low dose because of the pain just about everywhere. Unfortunately both persist.

No expert answer here....but I find the pain, numbness and especially that tight feeling are often related to #l the amount of swelling, #2 peripheral artery disease and #3 Thank you prednisone. I do have poor circulation I know especially in the legs.

Sometimes I look down thinking I still have the compression hose on and I don't. The bottoms of my feet have no feeling either. We really have to do a lot of guessing, don't we? I'm lined up for some therapy, soft tissue, next week and then vein mapping of my legs and arteries going to the heart??? Couldn't we just test forever??? I guess there is comfort in knowing we are in the company of many....there is for me anyway. My back was killing me and I didn't feel so bad when I found some of my fellow GCAers and PMRers had the same pain. 💖

Did that help?? Hope so!

Yes, I say a prayer for all of us competing with daily pain. Thank you

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