Good afternoon!

Still not sure if I have PMR but GP is assuming I have. Have an appt with Rheumy in a couple of weeks for confirmation. I wonder what your collective wisdom on my 'case' is?

I'm male and 52 - so atypical candidate for PMR.

A couple of weeks before Christmas I had a stiff neck which was so bad in the mornings that I had to use my hands to lift my head off the pillow. About the same time I found I couldn't lifet my legs to put my socks on, and I had to lift my right leg into the car as if it was a false one!

GP said the two things were separate and gave me a month's supply of naproxen. The neck improved very quickly but the legs didn't. I also started getting night sweats and lost a bit of weight so when I saw the GP a month later I was sent for blood tests, MRI and CT. CRP was about 50. Cancer was ruled out by CT, and (inconsistent with PMR) the MRI revealed some inflamation in the lower lumbar facet joints and some nerve root damage. GP thought it might be some sort of infection so put me on augmentin for 2 weeks while continuing Naproxen. CRP went down to 17 but this didn't indicate whether it was the anti-inflammatory of the antibiotic which was helping. So, they stopped the naproxen and carried on with the augmentin for another 2 weeks. The CRP had increased to 27 so the assumption was that it must have been the naproxen rather than the augmentin which had been helping. Meanwhile, having stopped the naproxen, I had started aching in my neck, back, buttocks, shoulders, and my legs had got worse. It was all worse in the mornings and after sitting for any length of time. Picking stuff off the floor, getting dressed, getting in and out of chairs was all an effort, also, apparently, I had started walking like someone in need of a hip replacement! .I felt very old! Basically, with the help of this forum and other online resources, I wondered if I might have PMR. I suggested this to the GP last week and she agreed, although she said what they had seen on the MRI didn't really fit with PMR and there was still a chance it could be a specific infection which the general antibiotic hadn't 'reached'. Anyway, she put me on 15mg prednisolone and after a couple of days I feel so much better. Still a bit achy after sitting and first thing in the morning; and I still have to lift my leg into the car; but otherwise, hardly any aching, and much more energy.

Sorry - I went on longer than I had expected, but it has taken 3 months to get to this stage and it's quite a long story!

Just thought I'd introduce myself and wondered if you would agree with the PMR diagnosis?

27 Replies

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  • Hi Jontie,

    Some of the symptoms certainly sound like PMR - the aching and stiff joints plus some fatigue. Your age may make you atypical, but certainly should not rule out PMR, many younger people seem to be succumbing, including males!

    The achiness in morning is probably due to Pred taking a couple of hours to get working. Not sure about one leg being worse than other, PMR is usually bilateral, although having said that my left shoulder was considerably more problematic that the right, but I now know I had arthritis in that as well!

    Naproxen did nothing for the pain caused by the inflammation whatsoever, nor will anything other than Pred if it is PMR. However, 15mg of Pred is likely to mask other pains that are not PMR related.

    Sorry, have probably muddied the waters even more!

    All I can suggest is keep some notes regarding how you feel on a daily basis, and maybe what went on before the symptoms appeared - were you under particular stress of any sort ( that seems to be a major factor in PMR occurring). If you can give the Rheumatologist some background (not War and Peace, but some bullet points) it may make his diagnosis easier.

    Good luck with your appointment, and please let us know how you get on.

  • Thank you for your reply - although it has muddied the waters a little bit! Is it really the case that naproxen won't touch pmr? For me, it was nowhere near as good as prednisonol but it did improve things a bit. Presumably there are degrees of pmr? If so, perhaps in "milder" cases naproxen can help?

  • Yes. Sorry about that, it's not a simple illness to diagnose, lots of symptoms are similar to others illnesses. No wonder doctors sometimes struggle!

    As I said Naproxen did nothing for me, but I was almost into 18 months without a diagnosis and had well developed GCA. Maybe, early on, before the illness has really go a hold it works.

    Maybe symptoms also manifest themselves differently between men and women, and ages! Mark certainly can relate to your symptoms- so maybe it is the dreaded PMR!

  • Naproxen didn't touch my Pmr pain either. Sadly only pred.

  • I used Naproxen while trying to get a diagnosis. Taken consistently it did keep a bit of the inflammation at bay which I would only realize when I tried to stop taking it because it wasn't solving the problem and I was worried about my stomach. On a scale of 1-10, naproxen was a 1 or 2, prednisone a 10.

    Difficulty with life activities sounds normal as does having to lift my leg to get out of the car! Morning stiffness and after sitting too long as well.

  • The fact that pred is a 10 does seem to help confirm a PMR diagnosis. The problem of your leg does seem strange though. Have you asked to have an xray?

  • It went away with the prednisone. I think it was from the piriformis muscle being so tight. I'm " lucky " that my PMR symptoms are classic, or so the rheumy says and my labs follow along. I've been checked twice for RA and it's been negative.

  • Hello Jontie, Greetings!

    Your diagnosis sounds spot-on to me, and I think we have a similar story.

    My PMR started just over 2 years ago at a relatively young and 'fit' age 57 with a stiff neck which I initially thought was down to having some some 'serious' house decorating work during the previous few weeks (ceilings are the worst!). Driving became a precarious activity because I couldn't look over my shoulder at junctions and when reversing. And, yes, getting in and out of the car became a herculean task due to all-over muscle pain, stiffness and weakness - not to mention putting on socks, raising arms above head, night sweats, weight loss etc. Ohhhh! :-(

    In my case, the PMR symptoms coincided with a nasty bout of Bacterial Pneumonia (the type you catch from someone, somewhere) and CT scans, X-rays etc ruled out anything more serious - Phew! Once the Pneumonia was cleared up with antibiotics, the real fun started. Continuing, absolutely crippling all-over pain, stiffness, weakness and fatigue for some weeks which my GP initially put down to post-viral symptoms and recommended painkillers to treat (Mmmm...:-/ ).

    After hammering-down my GP's door with my own amateur research into my symptoms, he conditionally diagnosed PMR and prescribed 30mgpd Prednisolone. Result? Within literally 3 hours, 90% of symptoms miraculously relieved, and feeling out-of-the-woods, or so I thought. An appointment with a Rheumy 12 weeks later confirmed' straight' PMR - fortunately with no complications like GCA. In the meantime, my CRP and ESR inflammatory markers were fairly 'normal' - but, as you probably know, with PMR these aren't necessarily conclusive either way.

    You're at the start of your PMR Journey, and there are lots of experts and veterans here to offer their collective wisdom too (they're a nice bunch of people and we have some fun in between the serious stuff!). Just to say that PMR (symptoms of an underlying auto-immune illness) are, for many of us, life-changing in some ways (e.g. mental and physical energy levels, fatigue, Brain Fog, etc).

    The 'magic' Preds don't cure the underlying illness, but with careful management (a bit of a precarious learning curve in itself when tapering down from the initial dosage), they at least restore some relative quality of life until the PMR (hopefully) goes into remission. The timescale for this is at best 2 years and, for some, considerably longer, as many will confirm here.

    That's my story if it helps - best of luck on the Journey and, above all, learn to pace yourself along the way. You're in good company here..

    Best wishes and keep us posted

    MB :-)

  • Could be PMR - but I wonder if the MRI result is suggestive of a spondyloarthropathy which would also fit with the relief you get from naproxen and the neck pain. It would also respond fairly well to pred and is sometimes confused with PMR. I assume it was a normal MRI - MRI with contrast might be needed to identify the other and it also requires an experienced radiologist who knows what they are looking for.

    I hope you will be well investigated by the rheumy - if you aren't look for a second opinion.

  • Thank you. A contrast medium was used in the mri. Apparently, they would have spotted nothing noteworthy without it. The radiologist was experienced, but there was no mention of spondyloarthropathy. I'll have to look that up!

  • Quite - so they were looking. But it doesn't rule one out.

  • Hi PMRPro, I was reading in the BMJ last week that the average time to diagnose spondyloarthropathy is eight and a half years. They seem better at diagnosing PMR!!

  • The general time for diagnosing autoimmune disorders in general is said to be heading for 10 years! You'd think that if perhaps THEY suffered one they might get their fingers extracted...

  • My gosh, so eight and a half years is quite fast! Why are medics immune to auto immune diseases?

  • No idea - though I do know a rheumy with psoriatric arthritis. She was actually quite talkable-to. And she did say it had changed how she related to her patients...

  • Piglette, from my amateur experience of these things I can only guess that it's due to both the complexities around the causes and symptoms and / or a relative lack of research funding?

  • That's so interesting. I was diagnosed in Feb. Started symptoms end Nov last year. But I actually did not feel well and had a very stiff neck from end October. That went away though and my last PMR symptoms to appear were my upper arms, shoulders and neck.

  • Hi Jontie

    I'm no doctor but have done a lot of research since I woke up with a stiff neck and shoulders about 7 months ago and have suffered similar syptoms to you, but fortunately not as bad as yourself - sounds like PMR to me!! Buy this book on bookdepository.com ; 'The Polymyalgia Rheumatica Patients Sourcebook' Stephen Trutter. Has excellent info.

    I'm a 69 year old male who lives in New Zealand, I'm assuming you are in the UK. I'm desperate to avoid using steroids if I can. I have being going to the gym for the past 10 years and therefore reasonably fit , I'm sure I would be worse if I were not. Just some brief comments if they are of help. Obviously lose weigh if you need to, less to lift! Go on an organic diet, it will take at least 6 weeks to notice any change - our food is covered in pesticides which may be the reason why PMR has flourished over the past 30 - 40 years! Try acupuncture, I go twice a week, find a Chinese physio who does it if possible - limited success with this so far. If you are within driving distance of hot mineral pools to soak in, they are great for PMR! Obviously a really hot shower in the morning is a given.

    A couple of things you may not be aware of re pred steroids- if you are on them longer than 3 months you are considered a long term user and will get side effects, less than 7.5mg/day low, 10mg-20mg moderate dosage, above 20mg high- the side effects look worse than the PMR.The inflammation is not in the muscle but in the soft tissue under the muscle and between the joint. I struggle to understand how they have known about PMR for at least 100 years and don't seem to have a medication to clear the inflammation once and for all. I am also keen for any suggestions people can provide - sounds like we are all in the same boat so to speak!

  • Hi hiandri,

    Would agree that some of the side effects of Pred do look worse than the PMR, however if you have serious problems with PMR or GCA you have to look at things slightly differently.

    I started at 80mg, having been undiagnosed for 18months and already lost the sight in one eye, so on your example a 'super user'!

    However, I had little choice, at diagnosis there was a 50/50 chance I would lose the other eye - fortunately I didn't. So, my side effects although unpleasant were bearable knowing the option if I didn't take the Pred.

    There are others on this forum who were bed-ridden before diagnosis, and I think they would also agree that Pred gave them their lives back, or at least a better standard of living.

    No doubt we would all prefer not to take them, but some of us have no other choice.

    The Pred does control the inflammation within the blood vessel walls, however it does not control the underlying condition whether that be PMR or GCA. So while the condition cannot be cured, the effects can be controlled, that's not dissimilar to other illnesses.

    Pred is very cheap to produce, and although there is another drug being tested at present, not many drugs companies are willing to invest millions when there is a cheap but effective medicine already on the market. Maybe if these conditions affected younger people or children or were life threatening like cancer there would be more research- but unfortunately it is what it is!

    If you can get through PMR without Pred, then good for you, but please don't totally dismiss it completely.

  • "I struggle to understand how they have known about PMR for at least 100 years and don't seem to have a medication to clear the inflammation once and for all."

    For much the same reason there are not really cures for any autoimmune disorders as yet. Until you know the mechanism of the disease you cannot develop a cure, except by accident. Unfortunately there are few cures out there for many things. And I imagine in the case of PMR, an illness that predominantly has hit people who were already of an age to be retired or nearly there and who are predominantly female, there has been little economic pressure for the powers that be to encourage research. If an answer comes it will be on the back of the more "sexy" illnesses in research terms.

    I won't repeat what DL has said - I will just say I agree with every word. But you won't be the first to change your mind about pred. And actually - if you are offered pred, be grateful. I had 5 years of PMR with no pred. I survived but it was a very nasty experience and I lost most of my 50s to PMR. Constant pain does things to you - and it isn't just you who suffers. Plus, if you are really unlucky and go on to develop GCA, 1 in 6 or so do, then it will be pred or risk visual loss.

    And in my book, however unpleasant the side effects of pred (and some of us have next to none) none of them is worse than being blind.

  • Thanks PMR Pro,

    Appreciate your comments and support. I'm just a little confused in regards to comments on steroids and their effect. I have a good GP but recently saw a Holistic Medical Clinic GP who I felt was also good, and he told me 15mg/day, was a low dose to start with and unlikely to get side effects but some of the literature I have read tends to contradict that. No doubt I will work it out.

  • "I'm just a little confused in regards to comments on steroids and their effect."

    Sorry - which?

    Has your holistic clinic doctor ever taken pred?

  • How frightening that a GP should know so little about steroids and PMR. I do wonder why some doctors make these comments. I assume they think we are totally unaware as well and will get away with it.

  • Not to muddle up the waters but a quick question...... is it not possible that a body can have PMR and another condition alongside that makes diagnosis difficult? Which may be why while taking pred. and getting some relief, the added pain relievers help too??? Just asking!

    Jan

  • Hi Jan,

    Lots of us have other conditions as well as PMR or GCA, so yes taking painkillers will undoubtedly help those conditions, but not the PMR/GCE per se.

    I had/have OA, and pre-diagnosis was taking both OTC and prescribed painkillers, in fact so many over a 24 hour period I began to keep a diary to ensure I didn't overdose. I can categorically say they did absolute zilch for my GCA. Others may be luckier.

  • Jan - exactly.

  • What a fantastic resource this website is. Thank you all for your very helpful replies.

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