Yesterday I read the ACR/EULAR Paris PMR guidelines, 2014. It was quite surprising. Google EULAR PMR Paris and you will find them. They said 30% of PMR patients are eventually diagnosed with something else, and talked about the necessity of ruling out other diseases that mimic PMR. They also did not think that response to prednisone was a good diagnostic for PMR, but they liked ultra sound studies that look for bursitis.
I am concerned also about. The recent diagnosis or pmr and pred
when I did my training it was all about bloods and age groups >65-70
Then it was sudden onset usually within 24 hours and innability to raise arms or dress themselves
a lot of what I read indicates fibromyalgia and biomechanics causing problems with walking and giving pain in knees hips lower back shoulders and the problems prednisone can cause are glossed over
just a thought
I am rather flabbergasted by the guidelines, especially by the mention of bursitis above. I do have bursitis in several joints, but it only rarely causes me problems.
I'm a bit surprised at the figure of 30% - the usual figure quoted is about 1 in 5 or 6. It is very often LORA/EORA (late onset RA) which can often present almost identically to PMR and is often seronegative. The necessity of ruling out other causes of the symptoms is nothing new - for many years it has been said that PMR is a diagnosis of exclusion, you exclude the other options, try some pred and if that provides relief then you are working on a fairish thesis. If you have ruled out the other stuff and the patient achieves a decent QOL then you have achieved something positive.
However, something I have discussed with my research group is the fact that PMR is actually never the DISEASE, it is the name given to the symptoms of an underlying problem, and this can be one of many. Cancer is one underlying cause for example. The group in Bristol found that the response to pred is an important adjuvant diagnostic tool: if a good response to a moderate dose of 15mg of pred (not more) is found in association with certain other criteria like morning stiffness (painful or not) that lasts an hour or more, inability to raise the arms above shoulder height etc etc then it is fair to take PMR as a diagnosis and proceed from there. If the symptoms don't improve dramatically or there are other inconsistencies then a rheumy should be consulted. A higher dose should not be used because higher doses will achieve a response that may cloud the view. PMR is definitely quite typical in responding quickly and noticeably to 15mg of pred.
Further to that - you can say that there are two forms of PMR: one which responds well to a moderate dose of pred and another that doesn't. They can appear similar - until you give pred. The form we are talking about in the 3 UK forums is this pred-responsive form. You can have patients with typical symptoms fitting polymyalgia rheumatica - but it does not respond to pred and so it falls in the other group. Not a few people think that the patients for whom the steroid sparers (methotrexate and so on) work well over a longer period never had the pred-responsive form of PMR, the most likely answer would be LORA or something similar.
But autoimmune disorders are complex and often overlap in terms of symptoms. For the vast majority there is no cure, the therapy is symptomatic to prevent longterm tissue damage and invalidity. If a moderate dose of pred is achieving a good result then what is the justification of saying "I don't know what it is and it might not be PMR so I can't give you pred..." Which I have come across.
Pred may shorten my life by a few years (not sure there is much proof of that mind you) - but in the absence of another means of pain relief I think that is acceptable compared to the 10 years of pain and handicap I would have clocked up by now.
They can't really decide whether or not I have PMR but the thing that leapt off the page at me, was 'methotrexate may be useful in early disease as a steroid-sparing agent.' Friday is my MTX day and on a Saturday, I am not quite as stiff and immobile as the rest of the week.
I have Mucous Membrane Pemphigoid and Fuchs' Heterochromic Cyclitis, so am taking the MTX and was taking Pred, for the MMP. The Fuchs requires steroid drops and other drugs.
I don't know what you are reading - but in my experience the problems of pred are rarely glossed over. The long term effects of untreated PMR and GCA are not very different in severity - but they are glossed over.
It is accepted that it can creep up over a period of time or it can manifest literally overnight - but many patients who say it appeared overnight realise in retrospect, once they are well adjusted on pred, that in fact it had been there lurking for a long time.
There is a big difference between fibromyalgia and PMR - the PMR we discuss on the forums is responsive to a moderate dose of pred. Pred has not the slightest effect in fibromyalgia.
A great deal of the age group thematic is because there has been the attitude that "only the over 65s develop PMR/GCA", so when a patient who is younger presents with typical symptoms they are classified under any heading you like except PMR/GCA. It often leads to the diagnosis being missed or denied - on occasions with tragic results when someone spends months in a wheelchair, loses their sight or even dies as a result. Last year a 37 year old man in S Wales died of a stroke, caused by undiagnosed GCA. He had been under treatment, it wasn't recognised. And before you say it probably wasn't GCA at that age: it was, the pathologist at least knows all but it is invariably too late.
There are thousands of people who have gone blind because of undiagnosed GCA, many of whom had presented repeatedly to their doctors with symptoms but had been dismissed. The trial of fast-track referral in a few centres was started as a result of a case like that. A lady had repeatedly been to her GP with classical GCA problems and only when the sight in one eye went was she sent to A&E. Despite high dose iv pred the sight in the other eye was lost within a week, a common occurrence once the sight in one eye is gone. Someone left unable to live without carers for the rest of her life - for lack of a high dose of pred. Rather an expensive event in every sense don't you think?
Untreated GCA leads to blindness (not always, but often) but it also predisposes the patient to arterial disease, from peripheral arterial disease to aortic aneurysm. Even with antiinflammatory treatment with pred the long term increased risk of aortic aneurysm is considerable. One in 6 patients with pred-responsive PMR goes on to develop GCA, there is dispute as to whether untreated PMR leaves you at a higher risk of progressing to full-blown GCA and blindness, but many patients with "only" PMR certainly have considerable involvement of the thoracic arteries and damage can be caused to them. And untreated long term systemic inflammation increases the risk of certaon cancers.
So while pred is certainly not jelly babies - it is not a case of pred is bad, no pred is good.
Then you are quite lucky - the pain in my hands, wrists and forearms in the early years of pred made it almost impossible to work and my hips were very painful, I could only walk short distances and going up stairs was only possible on hands and knees. And the hip bursitis I developed again during a much later severe flare left me needing crutches, and only able to go anywhere above/below ground level where there was a lift.
Everyone is different - and that is part of the difficulty in defining or diagnosing the illness.
That is a terrific thought that PMR may simply be a set of symptoms around some underlying disease rather than a disease in itself.
Noninoni,
Thanks a lot for giving us the web site to peruse, which I just did. Like you, I was surprised about the percentage of alleged PMR patients who are eventually diagnosed with something else.
Not clear: if Prednisone is not a good diagnostic for PMR, I wonder what is or could be?
To tell the truth, I was a bit shocked by the lack of PMR solid knowledge that the guidelines disclose. You too? It's no wonder that there are so many of us cleaving to our beloved forums, trying to make sense of it all. Plainly, the scientists have not quite succeeded.
Barbara
Yeah, the more I think about it, the more logical it seems!
Barbara
Three studies have been published a few years ago on using MTX as a "steroid sparer". The underlying concept is that it changes the way the body metabolises pred and potentiates its effect - so you get a better effect from a lower dose. One said it led to a lower total dose, one said it didn't, one didn't come to a conclusion. Most recent comment is it isn't really a lot of use.
Through the forums I know of one lady who was on MTX and finally able to get off pred - but the chances are it wasn't actually PMR but another arthritis. Two other ladies were put onto MTX as a "steroid sparer" and initially were able to reduce well and get down to under 10mg for the first time. Then one developed full-blown GCA - she is sure because the pred dose was too low and she had probably had low grade GCA anyway. The other had a massive flare of her PMR symptoms which the MTX did nothing for and she was back to higher than she'd always been anyway. An elderly gentleman (87) who had been fine on about 10mg was put onto MTX by his rheumy. It may have made 1mg/day difference - but he feels permanently unwell. Is it of any benefit to him?
Eileen, You had pain in your hands, wrists and forearms in the early yeard of pred. That is not part of the common symptoms of PMR or is it? I have pain mostly in my neck and shoulders and hips, but I sometimes have pain in my feet, and upper arm muscles. It seems to come and go in those places. Does PMR pain come and go into different areas? I am perplexed. When I started on the pred. pain in my thighs and upper arms mostly went away, but not the neck and shouler pain. I know you said it could take several weeks for the prednisone to reduce the inflammation and result in pain reduction for some, I have only been on 15 mg for about 10 days.
Last question please: is it common to have a fairly pain free day, and then have several painful days, and then another better day (off and on) with PMR.
Thak you for your valuable input.
Padada, the classic areas for pain in PMR are the hip and shoulder girdle, each of those areas causing symptoms in areas including the legs (groin area and front of thighs) and the upper arm muscles and the neck. Any large muscle area can be affected, and yes some people do experience pain in their hands and feet. The pain can seem to "come and go" in certain areas, for instance I had some weeks of very sensitive shins which were unbearable to the touch. I also had a spell of pain in my ribs. My neck pain was somwhat worse before diagnosis and for this I found a large heated electric pad helpful. As for whether it's common to have a fairly pain-free day followed by several painful days, that can happen and is usually caused by someone having tried to do too much on the 'good' day. PMR loves stress, whether physical or emotional, and if you overdo things on the physical front just because you feel you can, then you aren't giving the steroids every chance on a certain dose to get complete control over the inflammation and keep it there. Remember the steroids aren't curing anything - sadly nothing does at the moment - they are just damping down the inflammation that causes the symptoms. So give that 15mg chance to work - if you don't then you will be finding that you need to go to 20mg (that is often the suggested starting dose where 15mg proves to be insufficient, especially for those overweight). Be patient - if there is anything that PMR teaches us, it is patience!
MrsO has said most of it.
A recent study has shown that yes, hands can be involved in PMR! She didn't mention if feet were included - but loads of us have complained that our feet felt as if we were walking on sharp pebbles or broken glass.
The neck and shoulder pain could be not just simple PMR problems but myofascial pain syndrome which affects shoulders and causes referred pain into the neck.
In MMP [Cicatricial Pemphigoid] it isn't used as a steroid sparer but as an immunosuppressant. They want to increase my dose but can't because of my elevated liver enzymes. When I don't take MTX, anything I take orally, is like swallowing razor blades.
The MTX doesn't help my eye at all, hence the Dexamethasone drops.
My Dermatologist is expecting me to be back on Pred. I am due to see him in a couple of weeks but, no appt has arrived yet.