Likely PMR diagnosis - questions

Bones, joints and muscles
1

Hi,

I am a 48 year old male living in Canada.

In approx. July of this year I began to experience extreme tightness and pain in both hamstrings, and my neck.

I assumed it was related to the extensive exercise I had been doing (Crossfit - Weightlifting and High Intensity Interval Training). However, the pain would not subside with rest, and eventually spread to my shoulders. Currently, the pain occurs at varying intensities (worse in the morning) on a daily basis and continues to affect my pelvic, upper legs, shoulders and neck. Some days are not too bad, other days are worse, but still not as bad as many of the experiences I have read on this site and others.

My GP believes this is PMR, but wants me to see a rheumatologist to confirm. All I know at this point from the tests is that my CRP is around 12 or 13. Unfortunately It looks like I won't be able to see a rheumatologist until April, unless my GP can pull a few strings.

I have been dealing with this by often taking 400mg of ibuprofen at about 2am, which seems to relieve the pain somewhat in the morning.

If the pain I currently experience did not get worse, I could possibly live with this and hope that it goes away without taking prednisone. However, I don't want to continue taking 400mg of ibuprofen on a daily(nightly) basis.

Questions:

1) Is there any evidence to suggest that taking prednisone will cause the PMR to go into remission any sooner or later with or without treatment? My GP suggeted that prednisone shortens the duration, but that's not what I get from the research I have done.

2) I there any info on whether symptoms may get worse or better over time without treatment?

FYI, I am aware of the link to GCA, my GP doesn't seem concerned about this. He also says his experience is that most of his patients only need to take prednisone for 6 months to a year.

Thanks

2

Hello b17941 and welcome although we never like to hear of yet another PMR sufferer.

If your GP "believes this is PMR" - and certainly the symptoms you describe fit the bill - then I don't understand why he didn't start you on a trial dose of steroids. A positive response may have provided the answer and prompt treatment relieved your pain rather than suffer for another 5 months unnecessarily. Plus taking long-term Ibuprofen will put your kidneys at risk.

To answer your first question, no Prednisolone definitely won't cause PMR to go into remission. Steroids do not cure PMR (nothing does at present unfortunately), they just damp down the inflammation that causes the symptoms. Neither do they shorten the duration. PMR goes into remission when it wants to and not when we want it to, sadly. For some lucky people that can take 12-18 months to 2 years, but for others it can take longer - mine took 5.5 years once on treatment.

With regard to your second question, it is possible for someone to get better without treatment but it can be at a heavy price. I have heard of someone who spent more than a year in bed in severe pain. I spent 3-4 months in bed travelling to rheumy appointments by ambulance and wheelchair but remained undiagnosed. I did very slowly recover in just under a year but it was short-lived. Other severe symptoms arrived and eventually both PMR and GCA were diagnosed, the latter arriving through the 'back door' due to me having been put at risk by non-treatment for PMR the previous year.

Has your GP run exclusion tests, such as a blood test for rheumatoid arthritis? Also, have you had a Vitamin D blood test? If deficient, you can suffer pain in similar areas as those of PMR. Many of us in the UK have been found to be deficient and have been treated wit high dose Vit D supplementation.

You say you are already aware of the link to GCA but your GP is wrong "not to be concerned about this". Untreated inflammation coursing around our bodies can lead not only to GCA but many other nasty illnesses.

I hope this helps to answer your questions and I'm only sorry I can't give you more positive news - I wish you well..

3

Hi and welcome from me too. There is little I can add to MrsO's answer for the moment except to tell you to download this document and take it to your GP:

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis byQuick and Kirwan.

There is a link to it in this post on this site here:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

It is aimed at GPs in particular and gives a way of deciding whether a patient has a simple case of PMR by giving a vit C/pred/vit C "sandwich (see pages 2 and 3).

Untreated PMR does put you at a higher risk of GCA, about one in six go on to develop GCA anyway and the rate is higher in untreated patients.

As for "most of my patients only need pred for 6 months to a year" - I question whether his patients had PMR in the first place since only about a quarter are able to get off pred in under 2 years and they are still at a higher risk of relapse than the 50% who need pred for 2 to 6 years, not to mention the other quarter who need pred for even longer. And that comes from experts in the field - not a GP.

However - download that paper and take it to your GP. You don't NEED a rheumy to confirm a diagnosis - it should be based on the clinical presentations and there are no tests to "confirm" it. A raised ESR and CRP (which you have) are suggestive of an inflammatory condition rather than muscle strain. Some specialists do like to wait a few months from the onset of the symptoms simply because PMR is similar to other problems which can and do resolve on their own with rest. 3 months of pain is a good basis, there are basic tests he should have done to rule out other causes - and a 15mg daily dose of pred should achieve a dramatic improvement within 24-48 hours with a return of the pain on stopping the pred. Not sure what more evidence he wants. Wonder how he would feel being left 6 months with no help.

Eileen

4

Thanks for the feedback and information.

My GP is trying to set up an earlier appointment with a rheumatologist, hopefully he is able to. If not, I will request that he at least do a trial with prednisone to see the results, and take it from there. I will also enquire abuot vitamin D levels, though I have been taking a lot of vitamin D the last month or so.

5

Update:

My GP arranged an appointment with a rheumatologist couple of weeks ago.

Rheumatologist thinks I am too young for PMR.

He seemed concerned that it could be something more serious, so sent me for blood, urine and chest x-ray.

Tests revealed a significan reduction in inflamation marker levels from previous tests- esr at 12, I don't know previous level, I know CRP was at 13 or so previously, I also don't know what the new readings are for that.

Everything else looked good. He is scheduling me for bone and heart tests prior to next appt. In general, the rheumatologist seemed very attentive, he emphasized the implications of starting a steroid regime and doesn't want to go that route until he is as sure as can be. One concern is that once you start the prednisone, it can cover up a lot of other more serious issues which can then can remain undiagnosed.

My symptoms have improved quite a lot the last week or two. Still some pain and stiffness in upper legs, groin, lower abdomen, and shoulders - also at times quite sore ball of left foot which comes and goes. Overall, the pain at this point is annoying, but not nearly as bad as in the past - I'll hope for continued improvement, but I know things can get worse as quickly as they get better.

6

Hello again b17941

Well it does sound as though you've got yourself a good rheumatologist who is being very thorough and leaving no stone unturned. However, at 48 you are not too young for PMR - even younger people have been affected.

The good news is that you seem to be having an improvement in both your pain levels and your blood test markers so even if it should turn out to be PMR, then it seems as though it's on the wane. Continue to look out for any signs of the linked condition GCA (head/temple/eye/jaw/ pain). I say this because I recovered from undiagnosed and therefore untreated PMR in just under a year, relying solely on Ibuprofen and Paracetamol to get me from the bed to the bathroom for almost 4 months. Towards the end of that year, even worse symptoms arrived on the scene and I was eventually diagnosed with both PMR and GCA. I really don't wish to put a dampener on things for you but just wish to stress the need for you to remain alert.

Lots of good luck wishes for your continued improvement.

7

Your rheumy is quite right - PMR is a diagnosis of exclusion and the other possibilities must be ruled out first - not least because there are a few forms of cancer which can present with almost identical symptoms. It is something that annoys me actually - if it were called polymyalgic syndrome the doctors who drag their feet in looking for other things might wake up a bit instead of jumping in and trying pred and then saying oh, it can't be PMR if you don't respond (it probably isn't but they should have looked first!). I don't know about your system but in the UK and most of Europe those basic tests can be ordered by GPs - and they can order them immediately instead of the patient having to wait for a rheumy appointment - which can take weeks, even months.

Good luck

8

Hi Again,

Symptoms persist.

Met with Rheumatologist again. X-ray, blood, bone, connective tissue tests show no signs of other disease or cause. Doctor still insist I am too young and does not want to start long term prednisone therapy. He is sending me to a neurologist for further examination and second opinion. He doesn't seem concerned about GCA, but I will be keeping an eye on related symptoms.

I am now thinking this is could have been triggered by a tdap vaccinaton I had back in early July to protect my (at that time) one year old son.

9

Perhaps I am losing it, I double checked, tdap was august 2012 - symptoms began approx july 2013.

10

Hello again b17941 - I feel so frustrated for you. If only the rheumatologist had suggested a trial dose of 15mg of Prednisolone (steroid) that might have provided the answer. If you didn't experience relief in your symptoms within just a few days to a week or two, then they can be stopped without any problems at that stage. You have everything to gain by such a trial and nothing to lose.....except perhaps around 70% of your pain. rolleyes Oh dear, poor you. How about requesting a second opinion?

MrsO

11

Exactly what I was thinking when I read these posts just before going to cook dinner! That's why I offered the paper from Quick and Kirwan. A week of 15mg pred is a commonly used therapy in all sorts of things - it doesn't commit you to a life on pred.

However - we can lead a horse to water but we can't make him drink. We'll keep our fingers crossed they will give in and try it at some point - after all, IF it IS PMR, then you need pred, there is not a lot of choice except a rubbish quality of life.

I gather getting a second opinion in Canada is not easy - but maybe your neurology specialist will be a bit more adventurous. We have a lady on the other forum who has just seen one and he diagnosed her problems as being exactly what the rheumy had said categorically it wasn't. A few weeks ago she wouldn't/couldn't cross the road because of the problems. Today she has travelled from South Wales to Southampton to see her daughter. It may sound a minor triumph - to her it is a miracle.

Good luck

Eileen

12

Hi there,

I am a little older than you and had been training for a National competition in May of 2013, which included weight training, running and intensive paddling. I woke up one morning after a very hard day training and thought I had strained or torn my hip flexors. I could barely get out of bed and had very strong cramps continuously throughout the day. After a number of weeks (16) of less activity the pain and stiffness did not go away. It actually got worse with feelings of illness and I was unable to sit in any chair without having severe cramps. I could no longer run, walk fast, or walk up slight inclines. Getting dressed in the morning was pure torture and my socks never got put on.

Pain killers did not help, not even prescription ones. My doctor suggested some blood work and it came back showing an infection count through the roof. He put me on antibiotics and after a week, no improvement.

I was then sent to an internal specialist who suggested that I have PMR and should start taking 20mg of Prednisone for three days, then cut down to 10mg. After a week on Pred I was able to walk better, my infection went away, and I could get dressed more easily. I still couldn't train the same as before, but at least I felt human.

Things stayed the same until November, when I started to get pain in my upper body along with my lower extremities. I had been told this might happen, so it wasn't a surprise, but certainly a disappointment. I now can't do anything strenuous, pretty much just walking. Fortunately I don't need to work as I don't believe I could hold a job, especially a physical one.

Mornings are tough and by noon I am feeling better and feel like being active. I need a nap or two during the day as I tire easily. I bought a zero gravity chair which allows me to sit awhile without too much stiffness. All other chairs and driving my car causes my muscles to tighten up with a lot of pain and stiffness.

Hopefully the PMR runs it's course and disappears soon.

I hope this helps.

13

Hi Shawn

Well I'm glad your internal specialist came up with the correct diagnosis (not that I wish PMR on anyone!) but what a shame after you getting such a good response from the steroids he advised you to reduce from 20 to 10mg after only 3 days. This fast reduction is no doubt the reason that after several months your symptoms resurfaced so badly. It isn't clear whether you have remained on 10mg or have reduced further. If the latter, then an increase in dose may help to improve things - it certainly doesn't sound as though you are on a sufficiently high dose to get and maintain overall control of your symptoms. Steroids aren't curing PMR - there is no cure at present unfortunately - they are just damping down the inflammation that causes the pain until PMR itself decides to go into remission, and that can taking anything from 18 months to 2 years for the very lucky, and years longer for others. All good wishes.

MrsO