Hi everyone, this is a bit of a strange question but here we go. I'm now aged 59 and was diagnosed with PMR on Christmas day 2020 at my local A&E based on on inflammatory markers and had been suffering from considerable stiffness in my legs and shoulders.
25mgs was the magic figure to sort me out and I managed to taper down to 6mg pretty quickly and here I am after one major flare following a skiing accident in March on 7mgs (I've never got below 6mgs)
Now I've been reading Kate Gilbert's book 'PMR and GCA Survival guide' and I read all the Q&A's on this forum and I've come to realise that I've never really been in pain, I've just suffered from stiffness.
Currently my hips and legs ache but not enough to stop me playing tennis this afternoon and it's got me wondering if I've actually got PMR.
My GP is clueless and the rheumatologist I've seen once was just focused on me reducing 1mg per month
Any thoughts??
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Achyjoints
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On just that, impossible to say. Your stiffness or aches may be someone else's pain and vice versa. I didn't have pain originally, just increasing stiffness and inability to do classes and machines at the gym. The pain arrived after several months when I wanted to use the cross-trainer in the gym and I developed massive claudication in my thighs. Then the next stage was myofascial pain syndrome effects - they were painful.
That is what has been happening to me when attempting to reduce for months now - the first place that stiffened was my thighs, steps have been a nightmare. But the pain didn't increase.
Why a fraud? I think everyone wonders at some point, especially when their experience seems different to others. Rheumies seem to wonder about patients who are bog-standard average PMR patients!
I am finding it harder to taper on the lower doses. I am on 2.5/2. Have been down to 1.5 twice but stiffness returns. The 2.5 seems to keep pain and stiffness at bay 😊
Well I say a major flare, but pre my skiing accident I rarely had any aches if I was on the right meds, but the stiffness really hit me and I did a week on 15mg and a week on 10mg but have rarely been ache free since
Okay -that plus your description of “tin man” walk sounds very PMRlike to me….not everyone has exactly the same symptoms.Maybe stiffness rather than pain per se is YOUR version of PMR.
Plus if you haven’t got PMR then what is stopping you get to zero -and why is stiffness increasing as you get lower?
Thanks for your response, I did kinda think that myself but just wanted some confirmation from the 'experts' as it's virtually impossible for me to speak to my GP
Hi Achyjoints. I was diagnosed with PMR at age of 64 in Jan 2018, when I had alarming aches and pains all over my body. Like many people, I had never heard of the condition. The GP said it would probably go after two years (that, apparently, is what many medical students are told when training).
After two years, and tapering of Pred (but dose upped substantially with Shingles) I actually did wonder whether I had PMR because I was not having the ‘normal’ symptoms described by so many other sufferers. The GP used to tell me what dose to take, based on my ESR and CRP levels. I just continued, as instructed.
After two years, I asked to see a Rheumatologist because I was not sure I had PMR. The Consultation was over phone during Lockdown and took 48 mins. They then wrote a three page letter, confirming that, in their opinion, I did have PMR.EVERYONE IS. DIFFERENT. I still wonder if it is PMR I have and now think I may be having a flare. But, as we get older, other causes of aches and pains come into play.
I've been the other way round - more pain than stiffness! Tiredness was my strongest symptom really but it was adding to the (undiagnosed) fibromyalgia I already had.
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