After a few appointments with Rheumatologist who was adamant I did not have PMR, he agreed to a CT scan with contrast. The result was likely PMR or large joint arthropathy.
I was put back on a short course of Pred while starting Methotrexate as a longer term med. I am in contact now with Rheumatology nurse at my local hospital. The consultant had never seemed interested in me as I was "too young" for PMR. It was suggested I change consultant which I have, though I don't see them till December.
I am not convinced about Methotrexate. I have had 2 colds in short succession and have yet another short course of pred. I never wanted to yo yo with that but I can only get what I am prescribed. Prednisolone works, and allows me to keep active.
None of this treatment has come with any diet or lifestyle advice. It is all about medication and blood tests.
This has all been going on over 2 years now and I feel like I am in a snakes and ladders game.
I read posts on here and the PMR magazine so I know there are no easy answers. It is just all very frustrating.
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Sl0th
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Do hope your new rheumy is rather more enlightened about PMR and age of onset! How old are you now? I know you were under 50 at the start.
How long have you been on MTX? That is fair enough if you have confirmed evidence of arthropathy but it is unlikely to be outstanding for PMR symptoms and it is perfectly possible to have both. Even in the diagnoses for which it is effective, it takes up to 6 months to work and doesn't work for about a third of patients - something established in a study and apparently something of which a lot of rheumies are oblivious!
But don't hesitate to protest if the MTX isn't helping and is compromising a decent quality of life.
Thank you for your reply. The rheumatologist, when I first met him and before he looked up from the computer, said he had never seen PMR under 50. After the scan and his diagnosis I had turned 50 but have had this for 2 years.
I have had 7 weeks of weekly MTX and was told that it would be at least 3 months before any consideration of effectiveness. I am not convinced about it but will need to give it at least that time. I have fortnightly blood tests. I know pred has it's problems, but I haven't had anything bad with it and the help to my condition is so clear to me and my family.
Every prednisolone prescription is shorter and more begrudged. I pay for prescriptions too. I have used prepayment when I was on more things and will again if needed but not value for money yet.
His not having seen PMR in under 50s is NOT the same as it not happening. It often says "extremely rare" - again, that is not the same as "it never happens". Professor Sarah Mackie in Leeds who is probably the top PMR expert in the UK, says she has several patients in their 40s and that there are several myths about PMR.
There is documented evidence of GCA in a 37 year old man in South Wales, found by the pathologist at post mortem - but doctors will tell you it doesn't happen in under 50s. The youngest PMR patient in the literature was 24 - OK diagnosed on the basis of symptoms and response to pred as there was no alternative then but we have had a few patients who were told it couldn't be PMR, they were too young, but PET-CT proved that not to be true.
There are warnings in the literature about missing a diagnosis because of the blinkered regard for age. It becomes a self-perpetuating myth - if a patient comes with a clinical history that suggests PMR but is under 50, it isn't even considered. The alternative is usually fibromyalgia - and I believe there are not a few patients condemned to suffering because although pred relieves them of their symptoms, their doctors are too bigoted to consider it might well be PMR.
I too had the "you're too young" treatment at first (56) I found prednisone worked but it is a long haul 3 years for me and quite a lot of yo yo with dosage don't believe anything else works other than steroids - you just have to be patient and ride it out unfortunately and every person is different. I did find self care - not getting over tired, gentle exercise - especially swimming and walking and good healthy diet ,lots fruit and vegetables and calcium rich foods and not forgetting VitD
Wow! Your experience is almost identical to mine. I’m in Canada- Rheumy diagnosed me with PMR Dec 2022 though said I was too young for it. (58). Taper under 5mg of pred causes pain. My body is happy at 6mg. She started me on methotrexate 2 months ago and it did not help pain when at 5 mg of pred. Rheumy wants me to take a higher dose of methotrexate now and is insisting I’m much too young for PMR. After be even having a cold for 10 years, I have had 3 colds and my first bout of COVID which was terrible. I’m much to young to feel this damn old…
As we said in your post a few months ago -your Rheumy seems to have scant knowledge of PMR… and unfortunately you are the one left to suffer. Any chance of getting another one that does?
She has referred me to a colleague who is an expert in using ultrasound on joints as a diagnostic so “we can be treating the correct condition” I’m cautiously optimistic…
Hope they also know that over 50 means 58 is a potential for PMR. Just because the incidence increases up to mid-70s before stabilising doesn't mean younger patients don't get it!!!
I do hope you get your medication sorted out and get to see someone who knows what they are talking about!
In reply to your question about diet and lifestyle, I am “ celebrating” having PMR for 3 years this month, have managed to taper from 25mg down to 4 very steadily with the only advice coming from this forum. In June I was the heaviest I’d been since carrying my last child in my 30’s, I am now nearly 75. I hated my body with all its rolls of fat and had blamed prednisone and statins. However, I decided to join Slimming World, it’s a sensible eating plan which includes most food groups but you have to be careful how much fat and sugar you eat. 4 months later I am 21 lbs lighter, no more rolls of fat, I fit into everything comfortably and feel great. It must be a lot easier on my joints and I am a lot more flexible. I appreciate this wouldn’t suit everyone but it ticked my boxes as fruit, veg, potatoes, whole grain rice, pasta, beans, whole meal bread,fat free yoghurt and low fat dairy are all included as well as lean meat and fish. I can even drink G&slimline tonic and wine in moderation. Having believed I would never lose weight on steroids I was pleasantly surprised at how easy it was and it is an eating plan I can stay with for life. Exercise is very much encouraged but not overemphasised, so I am working through my ‘body magic’ awards which all include varying degrees of exercise.
I do hope you manage to get a clear diagnosis and your meds. sorted out, but don’t despair about weight gain as there are ways to overcome it. I was lucky to find one that worked for me. Good luck.
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