Is it pmr or something else?

[Maggiemoo12]

Hi all new to forum, which is very interesting. Recently been diagnosed by Gp with pmr and referred to consultant rheumatologist. Aged 53. My symptoms are not the norm in as much as I am fine in the morning can go all day til late afternoon then the arms get heavy and gradually the pain builds up so I can’t lift my arms or put any weight on my hands. I am fit do regular exercise Pilates 3/4 times a week walk the dogs every day so was very shocked to be given this horrible pain. Also the pain moves around sometimes it’s worse in my hands sometimes knees occasionally ankles but mainly arms. The prednisone kicked in after 3 days and I felt fine. Went to first consultant appointment and was told to stop the pred straightaway as he can’t diagnose me properly while on it. That was 6 days ago. So far all I’ve had is ache y hands so not sure yet if cured ......?

[SheffieldJane]

Welcome to the forum Maggimoo12. As Pred only controls the inflammation in PMR and GCA, you need to do your part by scaling your activities back and pacing them with lots of rest. The pain will be much worse otherwise. I wonder if PMR has been caught really early or maybe it is not PMR? It is not really behaving typically. Is your pain bilateral? Do you feel like you have low level flu all the time. If it is PMR I am afraid you must be prepared for the long haul, it typically lasts between 2 and 6 years and for some unlucky people longer. Stick with us though, this forum does make life easier, it really pays to be an informed patient. A percentage of patients do not show inflammation in their blood. Definitive diagnosis tends to be made on your symptom picture and a quick positive response to Prednisalone. Good luck!

[Maggiemoo12 in reply to SheffieldJane]

Thank you for your kind words.

[Maggiemoo12 in reply to SheffieldJane]

I don’t have the flu like symptoms or any other symptoms it was just the pains which felt like I d ripped my muscles. Except my eyesight has deteriorated a bit but no headaches.

[PMRpro Ambassador]

If it IS PMR then you won't be cured with a week of pred. However - it does sound very strange and doesn't fulfill any of the criteria they use for a diagnosis of PMR for inclusion in studies. That isn't that critical for a clinical diagnosis but nevertheless you would expect some of them to be there.

PMR is only the name given to a set of symptoms and there are a lot of different underlying causes which need to be ruled out before you can say with reasonable certainly it is the PMR we talk about here. That is why the rheumy wants to see you without pred - tough but necessary.

How long had you been on pred and what dose?

[Maggiemoo12 in reply to PMRpro]

Hi I had been on 15mg per day for 2 weeks then stopped as per consultants instructions. On the first blood tests My rheumatoid factor was 24 ( should be less than 20) My ESR also 24 ( should be less than 20) and the Serum C Reactive Protein level was 26 ( should be less than 10). So perhaps not that bad. It’s a week now without the Pred (and I am touching wood as I say this) pains haven’t come back yet.

[piglette in reply to Maggiemoo12]

If you have been a week without pred and you feel fine it is likely that you do not have PMR, as I would thought that you would have gone back to the initial pain. What does your doctor say?

[SheffieldJane in reply to Maggiemoo12]

Well that sounds hopeful. Let us know how you go.

[PMRpro Ambassador in reply to Maggiemoo12]

There is obviously some inflammation somewhere - but the RF is a fairly meaningless thing unless it is proper high! If you have recovered after that short course of pred that would be wonderful - and it almost certainly wasn't the PMR we talk about. Do hope it lasts.