Fiat 500: Hi everyone - I have GCA and PMR, but... - PMRGCAuk

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Fiat 500

Fiat500E profile image
Fiat500E

Hi everyone - I have GCA and PMR, but just started getting a new sensation - what I can only call WOBBLY WEAK FEELING IN LEGS. They support me and I can walk without discomfort or pain - BUT - they feel weird - weak and NOT MINE.....Hope you understand what I mean.

Anyone had similar?

43 Replies

From the very beginning one of the first things for me was the feeling ,,,,,I’m walking with someone else’s legs ! That was before being unable to turn over in bed etc .

Fiat500E profile image
Fiat500E in reply to Chrob

Yes - walking with someone else's legs - about right. How are your legs now? Does this feeling ever go away?

Chrob profile image
Chrob in reply to Fiat500E

Sometimes it’s better than others , I found aqua pool walking good ,but of course this year hasn’t helped , going back next week .

Fiat500E profile image
Fiat500E in reply to Chrob

So do we know if these weird legs are due to PMR or GCA? Aqua walking no good for me as frightened of water...Hope you get back to doing it soon.

Chrob profile image
Chrob in reply to Fiat500E

I’m pmr , so maybe it’s that .

Fiat500E profile image
Fiat500E in reply to Chrob

Oh ok thank you. Keep safe.

I had very wobbly weak steps to start with and used a Walker then crutches to walk. Four years on I still use a walking stick

Fiat500E profile image
Fiat500E in reply to Koalajane

Such an awful illness this. Thanks for your reply.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Quite common side effect of Pred, attached a few seated exercises to build up strength - for starters - and then go on more advanced when you feel able - healthinfotranslations.org/...

Fiat500E profile image
Fiat500E in reply to DorsetLady

Aw thank you.

Mine started at the very beginning of my PMR, long before I was diagnosed or given Prednisone or methylprednisolone.

Oh boy do I have weak wobbly legs, as you say not painful just very wobbly, it’s a horrible feeling, mine are worse in the mornings, I couldn’t understand it at first but now I’m used to it now.X

Thank you. That is exactly how my legs feel when I am walking! I thought it was just me. I will try the seated exercises to build up strength. Another strange effect of Prednisolone. What next?! Best wishes and enjoy the sunshine.

Like Chrob the wobbly weak legs was one of the first symptoms of PMR to manifest before diagnosis. They are slightly worse now after 18 months of Pred. I can no longer climb the stairs without stopping. Any incline is an huge effort. I’m ok on the flat which is useful as I live in Norfolk !

Yep I get the same. It's usually telling me to take a rest.

Hi. Yes that has been one of my early symptoms and returned as I lowered Pred in the last 10 days. I have explained the feeling like I’ve had the blood drained out of my legs. Like you I can walk but my legs feel very weak and at times like I could collapse but I haven’t. I presumed it is a GCA thing but who knows. Interestingly it went after I had 6-8 dose of Tocilizumab but when I reduced from 12.5 to 10mgs 10 days ago that, and other symptoms, returned. I have that down as a flare and am waiting to speak with rheumatologist. The only thing that helped me was restricting activity and pacing what I do. Not easy when trying to build up conditioning! Good luck on journey!! 😬

Thanks for your reply. It is comforting in a way to know that others have the same symptoms - not that I want others to suffer, but I don't feel so uncertain and frightened.Thank you to all of you who have replied about WOBBLY LEGS..........

Back to 12.5 and suggest taking the slow reduction from12.5, even in 1/4 mg each change. Good luck

Cheers yes that’s probably what I’ll do. All the best 👍

My legs are really weak,its been like this for ages ! Im glad to hear its not just me ! I find Pred zaps your body and makes you feel week in general !

PMRpro profile image
PMRproAmbassador

Not sure which is worse - wobbles or wearing concrete jeans ...

Hi, yes me too. I used a step machine for 2 minutes at first and went up to a massive 5 minutes over time. This did help even though I could still have that burning feeling in my thighs. I would do just 1 minute a day if that was all I could take. Slow slow slow in building up strength . Good luck

So glad to read there are so many here experiencing similar. I feel like my legs are not secure and that my knee movement is really unstable. I call it "Bambi syndrome". Before this I used to wear high heels but no more I'm afraid. Uneven road surfaces have now become a problem. I've had a few falls and find I am tensing up because I keep thinking I'm going to fall. I've now torn cartilage in my knee which is very painful but can't get it operated on at the moment. Long overdue diagnosis. So I don't know if it was general wear and tear or down to the medication I am on causing it. Wishing you well.

Fiat500E profile image
Fiat500E in reply to Singr

Hi - I love the "Bambi Syndrome" - brilliant.

So grateful you raised this question- it's been such a conundrum for me. The weak jelly legs hit me after the first week on prednisolone (from mid Feb 2021 on 20mg) and has stayed ever since (now down to 12.5mg.) I got no answers from the rheumatologist, who simply said that prednisolone has many side effects and he had not heard of this one. Anyway I must say, it reduces mobility and confidence so much ! It's not intermittent. It's there all the time! I have no answers unfortunately except that walking exercises in the local hot hydro pool seem to help a bit. At least it maintains some of the strength I'm losing from not walking as much as I once did. All the best to you.

Thanks for posting this. I am coming up on 1 year of dx and prednisone, currently tapering 3mg.. Recently, each morning my legs, specifically the inside thighs feel like I have ridden a horse all night. I wasn't sure what was going on. As a side note, I am a practicing dental hygienist that sits on a saddle chair 4 days a week. But it hurts even on weekends.

PMRpro profile image
PMRproAmbassador in reply to SuzanK12

Are you really ready to be as low as 3mg? To get to that level in a year is very fast.

SuzanK12 profile image
SuzanK12 in reply to PMRpro

I guess??? Don't know, this is all new to me.. tapering off now at .5 mg once a month since 5mg. I learn so much from all of you and Facebook (Richard's keto for health. ) I seam to be doing ok.

I'm active, work, walk my dogs, and usually start my day with aibuprofen or Tylenol, but thats it.

PMRpro profile image
PMRproAmbassador in reply to SuzanK12

What I meant - I suppose - is: are you as good as you were at the starting dose? That is the idea ...

My wobbly legs came on about 3 months after PMR diagnosis, and I know just what you mean! I am bouncing on a rebounder for about 5 minutes each morning (good for the whole body) and I do find that this seems to help the legs; I can only say "seems" because there so often does not appear to be a pattern to anything!

I am very pleased to hear someone else describe their legs as feeling like they dont belong to you. After my first, exhilarating month of being on Pred, my legs have been like that, though in the first year the feeling sometimes went away and I could move normally. Now into my third year and at 5 mg I still need a walking stick, feel wobbly on my feet and as though the normal connection between brain and legs isn't there. It doesn't hurt, and it doesn't seem to be related to how much exercise I get, though of course this is a bit limited. I do my best to keep up with my garden, go for slow walks, and have three flights of steps from my carpark to house, that can be very slow. Some days it seems to be worse than others.What I wonder is, will this ever come right?

Fiat500E profile image
Fiat500E in reply to Tiredcat

Yes - this WOBBLY LEG THING is weird. I had it for two days and now - all back to normal - (well whatever normal is).It's all so confusing sometimes because, for me, it seems - one day this symptom and the next day another. Got to keep on the move though and keep doing our best - what else can we do. All of you on this forum are an inspiration.

Frewen1 profile image
Frewen1 in reply to Fiat500E

Hello everyone, only just come across this thread two days late, so thank you Fiat500E - have been grumbling for a couple of weeks since being put on added weekly Methotrexate, as the wobbly legs/feeling electrocuted symptoms that I've had for my 8 months on Pred has got markedly worse. (GCA, not PMR, by the way.) It's not just legs I find, but arms too - as if I've I've just lifted many heavy boxes, then put them down. Or as if I've just stuck both hands in electric sockets. My Rheumatologist expressed so much surprise at this that two days I was given a brain scan - entirely unnecessary in my opinion, but of course we'll see. (!) Exactly as everyone describes, with the walking, which I do daily, and the odd other ten minutes exercises - but I sometimes wonder if people think I'm slightly inebriated when walking outside as I definitely feel myself meandering through jelly... fun times

PMRpro profile image
PMRproAmbassador in reply to Frewen1

In the month I was on MTX, the greatest effect for me was an appearance/worsening of so-called pred side effects: constant hunger, flushes and the electric shock bits plus I ached as much as I had done with PMR and no treatment at all! And the fatigue ...

Frewen1 profile image
Frewen1 in reply to PMRpro

But only a month? I’ve been told open-ended, and trying to reduce Pred by 10 mg per fortnight ( which from everything I read is too fast? ) thanks for your confirmation - have the constant hunger thing too ..

PMRpro profile image
PMRproAmbassador in reply to Frewen1

I wasn't prepared to put up with the side effects - I could barely put one foot in front of the other and felt worse than I ever felt with PMR. My hair was falling out in chunks and I was gaining back weight which I'd previously lost on pred. I have next to no problems with pred, whatever dose.

There is no way you can drop 10mg per fortnight even on MTX. You MIGHT manage that speed on tocilizumab though I doubt it. And MTX probably takes longer to have an effect in GCA/PMR.

Have you read MrsNails epistles on MTX? She struggles to reduce even on MTX though she does do better on it. But it isn't a guaranteed effect and there are few clinical trials using it in either GCA or PMR. It is suggested in the PMR guideliens it only be used in discussion with the patient. And I said no - which my rheumy accepted. Haven't read the GCA guidelines view on it - but I don't remember it being "this is the way to go" at any point.

Frewen1 profile image
Frewen1 in reply to PMRpro

Thanks so much for that ... shall investigate definitely x

I am so glad you have brought this up - I have been blaming my wobbly legs on the fact that I was in a boot for 3 months for a semi ruptured achillies and now have a numb heel, also fungal toenails and am very anaemic it was worse when I was on 40mg waiting to start the tocilizumab - incidentally has anyone experienced a delay in starting tocilizumab? I am about to go down to 20mg end of next week and the tocilizumab has not been started yet - there is seemingly a lot of red tape involved but I am concerned that I shoud have started it by this stage.

Forgot to say I have GCA not PMR

PMRpro profile image
PMRproAmbassador in reply to springeramber

For next time - you can edit your own replies, just click on the box that says more. That allows you to edit or delete.

Not sure about the status of TCZ at present - I imagine the paperwork is delayed

springeramber profile image
springeramber in reply to PMRpro

Thank you will do

I have PMR and I had that same feeling. I think the illness and the pred weakens your muscles, reducing your strength and therefore balance and control. Try to keep walking to preserve some muscle mass.

I'm a bit late joining in but thank you for bringing this up - and I'm so glad to see that others have the weak, wobbly legs! Mine are undoubtedly complicated by having had surgery for spinal stenosis but that was deemed a success and I'm only on 2mg prednisolone. I cannot walk far but do manage to do Pilates at least twice a week which I hope is maintaining some of the muscle mass. Just wish the weak and wobblies would improve!

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