Problems when walking: Hi everyone, I’ve just... - PMRGCAuk

PMRGCAuk

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Problems when walking

Hullcitysupporter profile image
Hullcitysupporter

Hi everyone, I’ve just joined this group. I’ve had PMR since last August & am currently tapering my prednisolone to 7.5mg from 15mg. I am not in any real pain, but it feels, and has felt for some time that I have concrete blocks tied to each leg, which makes walking any distance very difficult. I also am extremely tired a lot of the time, although I can’t sleep at night for any length of time. Anyone else have the same problems & any answers?

55 Replies

When you say that you are tapering from 15 mg to 7.5 mg, do you mean all in one jump, or in incremental steps? If it is a straight jump from 15 mg to 7.5 mg, that is much too big a jump, so before others can advise you they will need to know the size of your taper decrease.

Stay safe

Oh gosh no. I started at 15mg in August last & have been tapering very slowly ever since. My rheumatologist said I should stay on 7.5mg for 6 months, and I’ve done 5 months so far, then it’l be 1mg a month until hopefully I’m off these dreadful pills.

PMRpro profile image
PMRproAmbassador

Lots of people talk about the concrete overcoat or concrete jeans - and the fatigue is an integral part of autoimmune disorders.

The pred has cured nothing - it is managing the inflammation that causes the symptoms to allow a better quality of life and less pain in the meantime until the autoimmune disorder burns out and goes into remission, which it does for the majority of patients. The other point is that you are not reducing relentlessly to zero come what may. You are tapering slowly to find the lowest dose that manages your symptoms as well as the starting dose did. You should feel as well at the end of each taper step as you did at the start.

But the fatigue - and possibly the inability to walk as far as you'd like - is something you have to manage with pacing and resting appropriately:

healthunlocked.com/pmrgcauk......

With regard to exercise - you have to get into "training" again, Your muscles remain intolerant of acute exercise and if you do want to do more, the best way is to start with short walks that you know you can manage and then build up the time slowly to allow for the training effect. Do too much at one go and you will feel awful and sore the next day - and then trying to exercise again while your muscle haven't recovered mean you postpone the improvement as they never get to heal properly which is what leads to the training effect.

Thank you.

Do you feel as well on 7.5mg as you did on 15? If you do not, what was the last dose where you felt as good as you did at 15mg?

I certainly don’t feel much worse. The extreme pain is gone at 7.5 but the only thing that bothers me is the dead weight legs & the tiredness. I’m due to taper to 7mg at the end of the month & I’m rather nervous about that.

PMRpro profile image
PMRproAmbassador in reply to Hullcitysupporter

You are now into return of adrenal function territory - that may be contributing. But I suppose what we mean is did you have any doses where you didn't have these feelings

No. It’s been like this from the beginning, except the fatigue seems to be more pronounced at the moment. It may be the heat in the UK at the moment! Also my age. I am 81

That is exactly how my legs feel, like lumps of concrete. I am currently reducing from 15mg, and I’m currently taking 7.5 mg. I have RA not PMR. 🙂

Have you had any answers from the medical profession how to improve this? Are any specific exercises recommended by anyone?

To be honest I thought it was something I had to put up with because it’s possibly a side effect of the medication/s I’m taking. If it’s caused by fluid retention maybe you ask your GP if compression stockings would help. 🙂

I think it’s a side effect of prednisolone. I have a telephone appointment with a rheumatologist in a few weeks & I have a list of questions to ask. Hope l get some answers!

As well as prednisolone, I also take amlodipine and methotrexate. So for me it could be any of them I think. Just be as assertive as possible, I know it’s not easy. 🙂👍🤞

I’ll report back after I’ve spoken to her.

Good luck, I’ll be interested to know how you do. 🙂

Thanks

Hello Rachmaninov, I would love to know if you are on anything else for the RA? Or are you managing just on pred? For 11months my GP said I had PMR, then 1st vsit to a Rheumi said it never was PMR, its RA. Currently still on 22.5 pred, and hoping pred & reduction will serve me, rather than going onto MTX as suggested. Hence my question as to whether pred is doing it for you. Many thanks if you feel ok with sharing about your experience!

PMRpro profile image
PMRproAmbassador in reply to SNOWYROSE

The problem with just using pred for RA is that it doesn't have the same modifying effect on the actual disease process that the DMARDs including methotrexate exert which reduces the effect on the joints that result in the long term distortion of joints leading to disability. The rate of that crippling joint damage has fallen dramatically over the last 30 years since methotrexate became widely available and routinely used for RA. Of course, it isn't the only option and doesn't work for everyone - but there are few RA drugs that do work for everyone or retain their effectivity permanently.

SNOWYROSE profile image
SNOWYROSE in reply to PMRpro

Thanks PMRpro, a star as ever with your knowledgeable reply. I am a couple of weeks into changed diagnosis and feeling my way forwards into the new territory!

PMRpro profile image
PMRproAmbassador in reply to SNOWYROSE

The biologics are very successful in RA - but in many countries you have to "fail" at least 2 DMARDs before you can have a biologic funded.

Trutta profile image
Trutta in reply to SNOWYROSE

Hello ...I wish I had been put on Mxt at the beginning and not Pred...told I was better and discharged as inflamatory markers were normal...2 more consultants later I was told sero negative RA...3 wasted years when I could have had better treatment. now on 3rd Biologic with Mxt and damage to wrists and feet. 20% of people with RA have -ve blood tests. its difficult to diagnose . keep records of symptoms and be pro-active. I now have a vg consultant who I totally trust. you need to be patient as treatment is a bit of a trial and see approach. Goodluck and remember to check out the NRAS website !

SNOWYROSE profile image
SNOWYROSE in reply to Trutta

Thanks very much, brilliant feedback

Rachmaninov2 profile image
Rachmaninov2 in reply to PMRpro

Thank you for that info. PMRpro.

My rheumatologist has been urging me to get off of Pred. so I have been reducing from 15mg ( by 1mg a week) now at 7.5mg. I very reluctantly began MTX ten weeks ago at 7.5mg (increasing to 10mg a week two weeks later) and getting some side effects. The plan is to decrease the Pred. at the same time as increasing the MTX. Is your rheumatologist happy for you to stay on Pred. and not begin MTX? 🙂

Have not asked! yet. The appt was so packed with her quick fire questions, physical exam and she asked me not to make notes 'just listen' (!). I have been reeling ever since, and finding out all I can before I proceed in any new direction. She says MTX and folic, and later reduce pred. Thanks

Good luck with it SNOWYROSE.

PMRpro profile image
PMRproAmbassador in reply to SNOWYROSE

Next time ask f you can record what she says - so you can check. Some are happy to let you

Yes.That can happen.Igot steroid myopathy.Lost my muscles in my legs.Gabapentin can also cause problems.Tiredness is horrible.I have now been told I have a low blood count.Probablt prednisolone induced.May be causing tiredness.

Well, if you will support Hull City ..........! Only joking of course.

I'm also 81, and went to watch Man Utd (pre Munich) play Hull City at Old Trafford. I think Raich Carter was playing for you then. Can't remember the result.

You've had good advice, as always here, re your PMR. I've had it for six and a half years, and it's been very frustrating. It does make it easier if you can learn to accept it, rather than fight it. Everyone seems to react differently to the problems, but hopefully things will get better for you.

Good luck.

Paddy

Paddy, I used to live down Boothferry Road at the back of the football ground & I well remember that day. It was so exciting. I now live in Manchester & still support Hull city. About this dreadful condition we have, it’s the fact that the medication (prednisolone) causes dreadful & many side effects that is the main problem as far as I’m concerned but I live in hope that when I taper down to a small dose that the side effects will lessen. Or am I being naive?

PMRpro profile image
PMRproAmbassador in reply to Hullcitysupporter

It should improve - but lots of pred effects can be PMR effects (I had them long before I got to tke pred) and there are things you can do that reduce the pred-effects. Just post and ask - plenty of advice on here ;)

Thank you

Hi again. Lovely to hear back from you with a little trip down memory lane - something that is always enjoyable.I used to watch Hull RL in the early sixties, when I was in Leeds. Always great fun, and a good day out when we had proper buses and trains!

I think you ultimately have to see pred as a friend, because it does at least keep the pain at bay. As PMRpro says, it does get better. Try not to force tapering down, as this can only lead to further problems.

I would have to admit that I, too, get tired walking any distance nowadays. Don't know whether this is just old age or PMR!

Cheers

Paddy

I know what you mean about old age maybe the cause of some of the problems, but I know I was very fit considering my age prior to getting PMR & taking prednisolone. I have been tapering very slowly & have been on 7.5mg for 5 months acting on my rheumatologist’s instructions & have another month to go, then begin tapering 1mg per month after then.

Keep an open mind about tapering at 1mg a month at the low doses. Most of us would say it's better to do 0.5mg drops. The rule of thumb is no more than 10% of the dose - 1mg is 14% of 7mg and 20% of 5mg!

As you have stayed for 5 months at 7.5mg, it might be better to stay at each dose for 2 months. You're still less than a year from diagnosis, so do take it steadily to avoid a flare, which would need an increase in the pred.

Some people are fortunate to go into remission in a year or two, but others have PMR for 6 years or longer.

Best wishes.

Thank you for your advice & I will probably take it, but at .5mg per fortnight

Fatigue and difficulty walking have been my main symptoms since being on Pred. I have had very little pain , though of course plenty before the Pred. I had trouble walking as a symptom before diagnosis, so I think of it as part of the condition , not caused by Prednisone. It does vary a bit; any tiny bit of stress, e g going for a medical appointment, makes it worse. Now I am at 4.5 mg, I think my walking is getting a little better, and I am just presuming the 'concrete legs' will come right when all this is over.

THat’s reassuring, and what I’m hoping for when I get to a lower dose. Thank you

The heavy constricted legs is my main problem too. Sometimes feeling as if they’re wrapped in tight heavy bandages. I think it’s the effort of walking on them that leads to the tiredness. (For me at this time it’s not fatigue). Painful when I stand but once I’m walking the pain eases.

I have just seen a vascular doctor who said it is the PMR and not vascular. My rheumatologist had already ruled it out!!!

I’m feeling quite dissolutioned and have gone back to my belief that I have to try all things and monitor what helps.

Certainly I allow myself to lay down during the day if they’re ceasing up too much. That helps me to get on with other things later.

I’m on 3mgs daily which seems manageable apart from aching legs.

Do hope you find ways of being that help you out.

PM PRO says it very well I have tapered from 20mg. to 2mg. with rusty robot legs and fatigue all the way. I am trying to go as low as possible on the prednisone to protect my eyesight, so I just"soldier" on hoping it will become better with time. I do think at times am a little less fatigued in the afternoon. I also have to contend wit an 93 year old body I'm sure that has some added effect. Unfortunately we canot stop aging. Tell myself I am lucky to be here.

Hi - I call them Tin Man legs - not so bad 18 months in and on 6 mg pred - still need 2 short naps a day - 1pm and 5 pm - Good Luck

Also use Tropics pillow spray and temple balm when trouble sleeping

I too have these heavy legs and used to have the feeling of a 2 ton weight on the back of my neck; this is now better, and I do find that after exercise my legs improve. I have a rebounder - like a mini indoor trampoline - and it seems to help, though this would not be for everyone. The one part of me that has not suffered is my fingers - could this be because I play the piano every day? I am on 5 1/2mg pred having tapered from 15 last August, and I too have days of huge fatigue, which on the wonderful advice of this forum I have learnt to accept!

Hi, your symptoms are classic PMR ( per my experience)Someone in past years called our awkward gait "Pollywobbles". Concrete boots and sleeves come and go... eventually remit.

Read PMRPro for the wise one she is...and pay attention to her advice and opinions. She has been the lifeline for many of us who came to this forum with our puzzling diagnosis and a handful of prednisone.

Remember, most symptoms are common as you will discover if you ask questions. Also the archives are full of information, and can occupy most of an afternoon, if you set to read them.

Remember, Your medical person may not know as much as the experts on this forum. So, Read carefully, take notes, then ask your doc.

Kind regards, Jerri

PMR diagnosed 2013

Thanks

Hi. Started about the same time as you and also now on 7.5mg.

I kind of assume that tiredness is just part of the deal.

As stated above small drops seem to be the order of the day. 0.5 mg drop per month for me seems to work.

I was going to suggest that you think about switching allegiance to the mighty Coventry City FC but on reflection its probably about as stressful as following your lot.

Good luck

You may laugh but my other team is Grimsby Town my late husband’s much loved team. I shall reduce by 0.5mg in a few weeks & report on my progress

PMRpro profile image
PMRproAmbassador in reply to Hullcitysupporter

Oh dear - there's no hope then!!! My husband is from Cleethorpes - don't laugh!!!

Well, what a small world. We should stick together!

PMRpro profile image
PMRproAmbassador in reply to Hullcitysupporter

:)

My experience has been slightly different to most of those replying to you. I have been on pred for two and a half years now, and am down to 5mg, trying very slowly to get to 4.5. I have been as low as 3.5 in the past but then have had to go up again. However, about the heavy legs, I have also been experiencing this since about December last year, and although I walk every day (I have a dog), I simply can't walk as far or as fast (and definitely not up hills) as I used to. I have not put this down to PMR because it has only come on relatively recently and previously I was able to walk miles at a fast pace. Also, although my PMR is much better later in the day, the 'legs' issue doesn't go away, so for this reason also I have assumed it's not a PMR thing but something else. I'm seeing the rheumatologist about it in July so hopefully she'll be able to sort me out.

Thanks. That’s very interesting & I’ll be interested to see what the rheumatologist says. My walking problem only started with PMR

I have just had a letter to say my appointment with the rheumatologist has been brought forward to end June - great news! So I'll report back then if anything helpful comes of it.

PMRpro profile image
PMRproAmbassador in reply to Margot27

If you asked for a vote on the forum as to whether those problems were PMR I suspect you'd find an overwhelming YES

Margot27 profile image
Margot27 in reply to PMRpro

Yes, I can understand that, but what made me think otherwise was that for nearly two years I have had no problem with my legs, other than the morning stiffness. The rheumatologist sent me for an MRI scan to see if it was a problem coming from my spine, but I haven't had the result - presumably nothing remarkable.

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