I have recently had a relapse, increased my steroids, ESR came down from 40 to 27 and symptoms went. Then a few days later I developed weakness in thigh and upper arms (between Xmas and NY) GP said 'virus' as ESR down and white blood cell count up. Weakness improved but then on Sunday I am back struggling to walk with weakness in thighs and can't even read a book with weakness in upper arms. Saw different GP and he said PMR not virus. BUT my PMR has always presented itself as pain in shoulders, groin and hips. I don't have pain now (my muscles don't hurt they are just weak) and it's in my thighs and upper arms.
So my two questions are 'can PMR present itself differently and if yes how can I be presenting so badly when my ESR rate is reducing?'
Any thoughts would be welcome. Thank you 😊
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EscapedtoWales
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Yes, I am sure that PMR can present in different ways even in the same person when it flares after being fairly well managed for a while.
However - I'm far from sure that your doctors should be assuming that this is due to PMR. Although patients describe the effects of PMR as causing weakness it is mostly because the pain limits what they can do and it feels like weakness. Objective measurements rarely confirm what medics call weakness. Have they ever checked your creatine kinase levels? They should be normal in PMR but can be raised in a couple of things that resemble PMR closely. Steroids can also lead to something called myopathy where muscles waste and become weak.
I think you should see a rheumy urgently - and if that isn't an option, your doctors need to send you to hospital for them to investigate.
Thanks. I really appreciate your advice. I can't say why but it just doesn't feel right plus I am also getting what feels like muscle weakness in my lower back and my back is clicking when I walk like the muscles have lost strength to support it ☹️ Will get back on to GP.
Just thought I'd let you know that I'm also experiencing lower back numbness to go along with some thigh numbness and symmetrical numbness in the big toes and heels. Although there could be many causes, and my rheumy said it was an "unusual" symptom and suggested a neurologist, my gut instinct is that it is the prednisone and she agreed that it could very well be.
Like with most medications, it can effect people differently. Just about 12 months into taking the pred, I wasn't walking normally anymore but needed to put both hands on hips and penguin-waddle to assist with balance. I noticed the heel numbness around September when I stepped on a roofing staple and didn't even notice it until I came into the house and tracked blood everywhere (sorry for the gory image).
I'm on 12mg of pred at the moment, and my doc is having me split off 2mg for afternoon, taking 10mg at 2 a.m. , then I start reducing again in around a week.
Diagnosis is not, of course, our job here, so you'll need your docs to confirm, but though it's an "unusual" symptom, it's not unheard of, particularly given that PMR is a vasculitis and numbness results from compromised vessels or compromised nerves.
They'll also ask you if you are experiencing any incontinence (roger that, though mild), or constipation (again, roger that, though intermittant) or any blurred vision (already wearing the coke bottles but hard to tell - thanks, prednisone).
Hi PMRpro. Thought I would just send you an update. Various blood tests have now been done all of which have come back normal (including creatine kinase, thyroid and Vit D). Current ESR is 30 which GP says seems to be normal for me looking at my results over the last year and 5 months.
I have now been signed off sick from work as I was struggling using the computer and driving because of the muscle weakness in my upper arms and thighs. GP does not think this 'proximal myopathy' is PMR (because weakness stayed even with an increase in steroids and a drop in my ESR) and has referred me to a neurologist (apparently there is a very long waiting list).
I have done a lot of reading around proximal myopathy and I can see there's so many things that can cause it (including the steroids and the other drugs I am on (pregabalin and nortriptyline) through to more serious neurological conditions (I am hoping the normal creatine kinase means that I haven't got anything too nasty). I just hope I can see someone soon who can start unpicking what is happening to me.
It can present itself differently , PMR could begin in your shoulder area and then begin to present in the hips and groin later , but it does feel to me that this is a situation that everyone has fallen into the " Either / Or Trap".
Its often not Either / Or in Health or an illness or the medication . You could have both an infection and PMR both having an affect on your system at the same time , each causing symptoms in each other that last longer than usual and affect results of different blood tests. It can even be something else , mild generally and not threatening , but a different condition entirely that needs its own attention and shows its face only when you are suffering from your more " obvious" health issues .
In replies , you have added more detail about you having previous discussions with your Rheumatologist about lower back pain and periods of numbness which may well have been made worse by you having an infection , having increased PMR symptoms or being running down and are making themselves known more as you go along.
These symptoms could be increased by use of steroids , or changes in activity with PMR making muscles tighter or causing nerve issues in the lumbar or sciatic area , but .... it could also be a set of symptoms that are separate from PMR/ Pred , just as your Rheumatologist suggested. As you are experiencing issues in this area more often it may be time to contact your Rheumatologists office and request for them to make the Neurology referral they originally suggested . And , seeing if you can see the Rheumatologist to discuss these issues further , especially if they are having an impact on your Everyday Activities and could be being caused in part by your PMR or Steroid Needs.
Hi Blearyeyd. Thanks you for replying. It seems that everything can get so tangled up with the PMR it's often hard to unpick what is causing what. I am trying to get to talk to my new rheumy - I think a discussion would be helpful about possible neurologist referral. I am concerned about the numbness as it is affecting my ability to drive to work - I am lucky I can work at home most of the time but cancelling meetings (which I had to do Tuesday) has not gone unnoticed by new management who aren't particularly happy I work from home in Wales when the office is in Yorkshire!
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