My German Rheumatologist is convinced (as are other doctors I have come across in hospital) that this is true. Can I please have some views/experience on this topic. I am hoping I can make him understand that there are many of us who don't agree (if he deigns to read this!!!)
Then I haven't got it and have presumably never had it, despite having all the other classic symptoms and the usual miraculous response to my first Pred dose. My blood results stay stubbornly at the low end of the 'normal' range and have been that way now for 15 years.
Other automimmune rheumatic/arthritic have the sero-negative tag added on routinely when no abnormal readings are found in the blood tests. Why not PMR?
Hi Constance, if you are taking the correct dosage of prednisolone and therefore whatever inflamation you have is being controlled then (I assume when you say blood results you are referring to ESR/CRP) your ESR/CRP results should be normal. If they were not normal then it would indicate that any inflamation in your body is not being controlled sufficiently.
if however, you are talking about normal ESR/CRP results prior to a diagnosis of PMR, then that apparently us also quite common. If I am right 1 in 5 patients diagnosed with PMR bloods will come back within the normal range yet still display all or some of PMR symptoms and when put on pred any or mostly all of the PMR pain is then brought under control.
regards, christina
I suppose it could be got round by saying it is something other than the PMR we speak about - but is still responsive to pred!
I had textbook symptoms for PMR: morning stiffness lasting an hour or so that returned at any time during the day if I sat for more than a few minutes (myogelosis), could not lift my arms above shoulder height without great difficulty and couldn't hold them there, thigh and bicep claudication (which are mentioned more as GCA symptoms in fact), sore throat and non-productive cough (also listed under GCA), sweats, depressed mood, fatigue, painful wrists and hands/feet, malaise. My ESR has never been above 7 and my CRP never above 0.5 - which was why I was not diagnosed. I got well over 50% relief in symptoms in 6 hours in response to 15mg pred. Most of the doctors I have presented that to agree: QED. And that includes doctors who trained in the German/Austrian system.
I will try to find the medical literature references that mention it - but if that is what he learned at medical school he will probably be very unreceptive however high-powered the references are. Does he read and understand English at a good enough level to understand them? If he is offended by that question I'm sorry but while my rheumatologist here DOES speak good enough English, my GP admits she doesn't and is delighted at the evidence I offer her - she trusts my translation!
But it's not, Christina ("mostly all PMR pain is then brought under control"
. I, and many others, still have quite a lot of pain - even after 3 or 4 years.
Then Constance, I really don't know what to suggest. I am not medically trained and only speak on my experiences or by what I read on the subject.
if you are displaying some or all of the symptoms of PMR yet this pain does not respond at all to 20/15 mgs of prednisolone perhaps you do not have PMR. I really don't know. Has your rheumatologist offered up any other condition because I do know that many other conditions symptoms Are the same as PMR, and that's why PMR is a condition diagnosed by a process of elimination . Eileen do you have any wisdom on this subject? Regards, christina
My pain has responded dramatically with pred. Now I can get out of bed, walk up a flight of stairs (albeit a small one!), walk 1 km, do none exhausting housework, etc. etc. I am now down to 6 mgs (after nearly 4 years) and the pain has reduced considerably, but it is still there!!! PMR was diagnosed very early on.
Anyway - for a public start to this. show him this page on this site which is written by professionals for professionals:
patient.info/doctor/polymyalgia-rheumatica-pro
where it says
"PMR can be diagnosed with a normal ESR and/or CRP if there is a classic clinical picture and response to steroids. These patients should be referred for specialist assessment." and
"Inflammatory markers (ESR, plasma viscosity and/or CRP):
Raised inflammatory markers are characteristic laboratory finding in PMR, but may be normal.
CRP is more sensitive than ESR."
The first has a reference to "Management of polymyalgia rheumatica; British Society for Rheumatology (November 2009)."
And the second to "Kermani TA, Warrington KJ; Polymyalgia rheumatica. Lancet. 2013 Jan 5;381(9860):63-72. doi: 10.1016/S0140-6736(12)60680-1. Epub 2012 Oct 8"
where they say
"Although markers of inflammation are often raised, no specific laboratory test exists for the disorder and the diagnosis is based on clinical assessment." Often means they accept there are cases with normal levels.
Elsewhere in the patient.info page it says that "there may be atypical presentations with normal or excessively high inflammatory markers".
In the Mackie and Mallen Clinical Review Polymyalgia Rheumatica by Mackie and Mallen published in the BMJ in December 2013 they say
"There is no general agreement on how high inflammatory markers should be for a diagnosis of polymyalgia rheumatica. Cases with “normal” (within laboratory reference ranges for age and sex) inflammatory markers have been described but are particularly difficult to diagnose,10 15 and British Society for Rheumatology (BSR) guidelines advise specialist evaluation if inflammatory markers are normal.4"
The figures are the references they cite. I will send you the link for the "free to air" version as I can't put it here without it disappearing!
These are for patients BEFORE diagnosis. Once you are on pred of course you should have normal, or at least very significantly reduced, inflammatory markers. And that does NOT mean the PMR has gone - it means the inflammation due to the PMR is well controlled at the current dose and that may not remain the case if you stop the pred or reduce it too far. That is why it is suggested the inflammatory markers should be monitored for response to treatment with pred. Even my ESR fell - from 7 on a regular basis to 4 on a regular basis - almost halved!
I wonder if I can find any German language references.
Hi Constance, whatever your rheumatologist says or thinks you do have PMR and despite your bloods always being normal your diagnosis was based on symptoms and how the symptoms responded to the only known treatment, prednisolone.
i think I have read on this forum that many sufferers still do experience great pain even on preds. Now that's where the big mystery lies! Why! Could it be that you also have alongside PMR another condition that is not treated by preds and therefore because it is not being treated with the relevant medication (is there medication that treats it? take fibromyalgia, I don't think there's any medication that can treat that condition) it's able to still display its pain. Constance, I really wish I had an answer for you because it must be a horrible situation to be in, but I just don't. But that could be one possibility. Regards, christina
Well, if that doesn't convince him nothing will. Thanks Eileen😄
Checked and double checked for every other possibility - all negative. A "normal" atypical PMR patient!!
The criterion is for a speedy 70% global response of symptoms to a moderate dose of pred (15-20mg) which return in a similar time frame on removing the pred dose.
Nowhere does the literature promise 100% freedom from pain - when doctors say it they are speaking from personal experience or to encourage the patient (a false hope all too often) and we have complained to doctors in the past about them doing that and also them saying it will all be gone in 2 years. It isn't in the majority of patients - yes, some have almost no pain, others are through and off pred relatively quickly, but that is by no means the majority.
And the patient may not ONLY have PMR - they may have osteoarthritis, they may have fibromyalgia or something else. But the criterion of the 70% improvement in symptoms allows for that - and a 70% improvement that allows normal day-to-day functioning is a big plus isn't it? The difference it made for me was a miracle - but I still had pain and some stiffness until the pred worked each day. That is the joy of Lodotra for me - I get up in the morning pain-free in PMR terms. I still have some back pain - but that is add-ons, as I say so often. It can be managed well with physio/Bowen/chiropractic.
And frankly - the diagnosis of pred-responsive PMR is probably one of the favourable ones even if a lot of people don't think so! It can be managed and isn't terminal or life-limiting, no early death associated with it. You shouldn't have been given a diagnosis of PMR until the other less pleasant alternatives have been ruled out.
There are some treatments available to help with the pain of fibro, which is itself as individual a condition as the number of people diagnosed with it.
I have both. The fibro was a very late starter but there was no doubt that it was something 'different'. For me, they are two distinctly different types of pain.
I have never been out of PMR pain. Even on a 40mg dose once GCA was confirmed I have always had residual pain. As Eileen says, they look only for a 70% reduction of pain, but then how much is 100%? It's going to be as individual as the person involved and the extent of their own version of PMR/GCA/Fibro. This is what makes these conditions so very difficult to diagnose.
What is normal? Normal for me does not mean normal for others. I suffered for 8 weeks, Rheumatologist said "I had no inflammation" because of my upper limit normal ESR. went back to Primary, self diagnosed, requested prednisone, boom! supression of significant symptoms. Down now to 5 mg day, up from 3 due to flare. Prednisone for 1 year. Gained 50 lbs (22 kilo). Still better than the dibilitating effect of PMR.
A very interesting and scientific lay analysis of "normal" from a person with GCA, a correlated disease to PMR (please tolerate the poor quality, it is worth watching!):
Hi, Constance. I am sorry your are having this problem. The nurse practitioner I see is going through the sane ideas. Can't they read the books. Eileen's link is quite clear. They are having me get an MRI because she suspects sacro- ileitis. I am zero neg. For that and at age 67 I do not think that's it. My ESr is down to normal also because if Prednisone. Like you my symptoms got better with pred. I wonder if they got some new journal article about this. Hope they cone to their senses. Pat
This discussion was also an answer to my question of whether we should expect a 100% pain reduction when on prednisone and when tapering prednisone.
At one time I had no physical pain, then one day I woke up in PMR pain. If I use the prednisone to squelch the inflammation, I figured I should some day return to the no physical pain place that I was in originally. No inflammation, no pain.
It seems that is not true, or it is not true in all cases. Everyone is different, and some pain may linger.
This makes it very difficult to assess when to taper to a lower dose or to determine whether the taper is successful or too fast.
I am new to this and at 15 mg I have not yet been able to do a successful taper. I have tried a taper twice and both times have had the pain return. I am ready to try a taper for the third time, but I really hope to know enough to do it right this time.
I've just given you a link to the "Dead slow and nearly stop" reduction I've used since 15mg with no problems - now at 4mg. 3mg is too far.
It is being used by a lot of people and they have almost all got further than ever before. A few have got off pred altogether - but that isn't the first aim. The first thing is to find the lowest dose that works for now.
The pred doesn't change the underlying autoimmune disorder - that remains and that is probably the cause of the left over pain. Your muscles are intolerant of acute exercise - so you must also do your part in management by pacing yourself and resting. Don't do things you KNOW will make you hurt - like washing windows, cleaning floors, carrying heavy bags. Your muscles can't do it and will protest. It will get better in time - but it takes time.
For completeness - the link again
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
The reduction plan is in the first couple of reply posts.
I also have sacroiliacitis - and it is NOT the same pain or problem as PMR by any stretch of the imagination. Mine is due to myofascial pain syndrome and severely spasmed muscles in the lower back - as diagnosed by the pain specialist, not by me! It is common alongside PMR and causes other problems that are so often confused by the doctors as being the ?PMR and when they are still there with a dose of pred they panic and decide it isn't PMR. You can have both!
I had cortisone injections locally which meant I needed less oral pred to deal with the PMR. And manual mobilisation of the spasmed and knotted muscles. For the first 5 years of PMR I used Bowen technique to keep that under control fairly successfully.
You seem to be one of the lucky ones. Pred for only one year and few pains. Pity about the weight though! I only put on 4kgs at first (that was over 2 years ago). After that I took off 10kgs. We are all different.
Good luck with the PMR.
"What is normal" - in this context, "normal range" is the range of values that is found in 95% of a large population of healthy people. And the doctors who trained about 20-30 years ago (and the people they have taught) when medical laboratories were just becoming big in the healthcare world are so fixated on the numbers that they forget the truth of statistics of which they have a very hazy grasp. 5% of the population fall outside this range by definition - half at the top end and half at the bottom end. I'm in the bottom end tiny triangle on the bell-shaped graph with a top-ever reading for ESR of 7 - others are in the other one and have naturally higher levels. You presumably are alongside me normally - but do at least mount an acute phase reaction which I and about 10-20% of others don't!
Grrrrrrr!!!!!