Hi all, I was dx'd with PMR in 2018 although my blood markers had always been normal.
At last meeting with my rheumatologist, she said that in her opinion I no longer had PMR (yippie!).
I continued to taper slowly and am currently at 5.5mg to minimize the chance of a flare.
My question is could a flare create severe back pain instead of previous early signs of hand, thumb pain?
Can’t see why not. What sort of back pain and where ? How long have you had it and from what dose? Sadly, unless the doc has something that others don’t, there’s no way they can know PMR has gone, especially at a dose higher than 5mg. Even 1mg can be enough to suppress low levels of inflammation. Just as well you have tapered slowly regardless. You also have adrenal function to think about and not withdrawing the Pred faster than they kick back in.
I wish I had access to these crystal balls some rheumies have - or maybe I don't, they don't work ...
Sorry to be a wet blanket but there is no way at all that the rheumy can say that you no longer have PMR - at least, not while you are on above 5mg pred! Come to that, not on any pred as even 1mg a day can be enough to manage the inflammation created by a low level of disease activity but no pred allows it to drip feed like a dripping tap into a bucket - eventually the bucket fills up and overflows. And as long as you are on enough pred - even those with reactive blood markers will have results in normal range - if they don't, they are on too little pred.
I have myofascial pain syndrome as part of my PMR and that results in tight back muscles, especially the piriformis and lats. If I do something to aggravate that I end up with severe backache - actually it happens anyway as I have a scoliosis that contributes to the effect on the back muscles.
Where is your back pain? Do you also have any thigh pain?
Thanks for your response.
I had complained to the rheumatalogist that I had pain behind my right knee and had been limping for some weeks.
I think that as my problem was not bi-lateral she concluded it was not a PMR symptom and together with the long time since I was initially dx'd she concluded that my PMR had 'burnt itself out'.
However, my knee continued to be painful and somewhat swollen so I saw a couple of private consultants and following an MRI which showed nerve impingement at L3, I agreed to have guided injections into the area.
However, my back continued to worsen and prior to the procedure, I had pain in the left leg also. At this point I was suffering severe pain standing and walking.
I was walking bent over and every step was agony.
The pain appeared inconsistently in the lower back, left foot, right knee, right buttock, calves etc.
I had the procedure last week but continued to have severe pain.
My consultant has requested a further MRI.
Currently, I feel that the pain is slowly lessening hence my question as to whether PMR could be involved in creating this pain.
Thanks again for your time
That sounds very like an involvement of back muscles. Leg pain can then be due to a spasmed piriformis muscle trapping the sciatic nerve. If you have low back pain of that sort and thigh pain on the outer aspect then greater trochanteric pain syndrome is a very real possibility
pubmed.ncbi.nlm.nih.gov/145....
yourphysio.org.uk/condition...
You can find exercises online to try - but personally I'd want them from a physio who had examined me properly, i.e. hands on. I found the clam exercise very useful but it is disputed for patients with current low back pain - I had been examined before being given it.
I do wish rheumatologists would stop thinking they are astrologers by telling people that they no longer have PMR. The only way anyone can tell if the PMR has gone into remission is when they stop taking steroids and have no problems. Have you been doing anything strenuous that could cause the back pain?
No piglette, nothing unusually strenuous. However, here's an update - today I have minimal pains in lower back! However, the pain in the the right hip is still very much there (could be bursitis), also the right knee (could also be bursitis). My left foot also aches.
I'm now wondering if I should increase (reluctantly) the pred from my current 5.5mg?
I should add that I'm taking gabapentin and cocodamol.
It does not sound that it is the PMR causing it, although I may be wrong. You should really only increase the pred to cover the PMR. Have you tried painkillers? If they work you can then be pretty sure it is not the PMR.
Are you saying neither the co-cocodamol nor the gabepentin has eased the pain….or has its eased the back but not hip or knee?
As you know PMR pain is usually bilateral, so even though the painkillers don’t seem to be helping I would still be querying it’s something other than PMR?
Has osteoarthritis been considered?
PMR flare 
Flare warning?
flare
Severe low back pain upon waking.
