Abnormal PMR?

I'm having a quiet day resting today after a tiring trip to a hospital an hour away for an MRI yesterday., am have been catching up on posts the last couple of hours.

I was diagnosed with PMR in July, 2014 ans GCA July 2015.  The two diagnoses have been so totally different for me, allowing for the fact that they differ in their severity.

What I wanted to comment on after reading so many posts is that I think my PMR had a completely 'abnormal' course from most if not all I've encountered.  Before diagnosis I had the typical symptoms,  difficulty getting upright after any inactivity so I eventually needed help getting out of the cR, bed or chair, followed by pain that brought me to gears when just lying still in my shoulders and hips.  I was diagnosed right away and started on 10 of Prednisone which was a miracle.   Two doses and I was back gardening.   My rheumy led me to believe this was a little bump in the road and I never thought anymore about it.....didn't research it, didn't join a support group.....I got back to full activity,  my markers went down and stayed down and I didn't even know what a flare was as I didn't have any!  By a year I had tapered to 6 of Prednisone,  doing and feeling well.

From what I've read and learned this is more the exception than the rule.  I had absolutely no idea how destructive the diagnosis was for most people. 

However all that changed in July 2015 when I was diagnosed with GCA!   Have been so ill, constant flares, markers up and down.....

Just wanted to let those with PMR know that I was someone for whom the diagnosis had little impact on my life if any......until now.....


37 Replies

  • I think though you have to remember that most of the people who end up on forums are the ones who have had/are having a bad time - they are the ones for whom it is difficult to get a diagnosis and for whom the reduction is a pain. So here it looks as if most people are having a hard time - whereas in fact it is the other way round - a majority of people never NEED to join a forum. We are also a skewed population (if you'll excuse the term) - we are all internet users. The majority of PMR and GCA patients are not and don't want to know about it.

    But I DO wish rheumies would not gild the lily - PMR is a pain and GCA is worse and it isn't just a slight bump in the road - it can be a VERY large pothole. Sometimes without a bottom...

  • Yes, all true,  but from others who have posted,  and from your comments who are very familiar with the disease, it seemed to be almost a given that control of the disease is almost impossible,  perhaps just my interpretation. I was quite glad my excellent rheumy didn't stress the seriousness of it, I was expecting to do well and I did!

    I just read a statistic that blew me away.  In the over 50 age group the prevalence of PMR is 1 in 133.  You would really think that even GPs would know more about it!


  • Animi, I am so sorry to hear about your "pothole".  Hope it gets paved quickly....  That is a very interesting statistic.  I'm beginning to wonder if PMR is (probably like many other things) caused by long term nutritional imbalances caused by deficiencies in our modern diet and habits we may not even know are bad.  Could go some way to explaining why it strikes mostly the older population, and also why it does seem hard for so many to control let alone experience remission.  

  • I agree.  I think our diet causes a lot of problems especially an environment of inflammation.   Autoimmune xiseases certainly seem to be escalating. And the new bacteria and viruses just add to the mix.  The article also said that people at risk for PMR would double in the next 25 years.

    Thanks for your good wishes,


  • "The article also said that people at risk for PMR would double in the next 25 years."

    That is because of the increasing numbers of over-50s - the numbers of people at risk of all sorts of things will double in the next 25 years if the increase in age expectation continues. The longer you live the more likely you are to have cancer of some sort for example - everyone would develop a cancer if they lived long enough, it is the consequence of senescent cells.

    If it were diet then it would be expected that there would be a far higher incidence in married couples or siblings who live together. It hasn't been seen.

  • It could also be ...

    As I firmly believe in my particular case ...

    That it is mainly older people who have flu jabs and shingles jabs ( mine both within seconds of each other) and there can be an adverse response to these by our auto immune system. 

    My problems began within 12 hours of the two jabs.

    Prior to having them, I maintain that I was in perfectly good health.

  • Lots of people developed PMR before the flu jabs - and I'd never had one either. It is always possible of course that it was the final thing that tipped your immune system over the edge but flu and shingles jabs are certainly not the only thing you could associate with PMR or indeed say was a definite cause.

  • My GCA was diagnosed after having  flu vaccination and cleared up after 18 months of pred. I then got another flu shot and the GCA returned. I searched on Pub Med for this and found this study. This is just the abstract but you can get the full report for anyone interested. It could just be a coincidence because lots of people get vaccinations and not everyone gets an autoimmune disease but maybe for some it is the cause. Anyway, I didn't get a flu shot this year and so far my GCA is in remission. 

    Giant cell arteritis and polymyalgia rheumatica after influenza

    vaccination: report of 10 cases and review of the literature

    A Soriano1

    , E Verrecchia1

    , A Marinaro1

    , M Giovinale1

    , C Fonnesu1

    , R Landolfi3 and R Manna1,2,3


    Clinical Autoimmunity Unit; 2

    Periodic Fevers Research Centre; and 3

    Department of Internal Medicine,

    Catholic University of the Sacred Heart, Rome, Italy

    Giant cell arteritis (GCA) and polymyalgia rheumatica (PMR) are inflammatory rheumatic

     diseases common in people over the age of 50 years. Herein, we report 10 cases of previously healthy subjects who developed GCA/PMR within 3 months of influenza vaccination (Inf-V). 

    A Medline search uncovered additional 11 isolated cases of GCA/PMR occurring after Inf-V.

    We discuss the role of individual susceptibility, the potential function of immune adjuvants as

     triggers of autoimmunity post-vaccination, and the correlation of our observation with the ‘ASIA’ syndrome, i.e. autoimmune/inflammatory syndrome induced by adjuvants and including post-vaccination phenomena. Lupus (2012) 21, 153–157.


  • Have you read any of the stuff about ASIA syndrome? 

  • I have not but will look it up.

  • Very interesting. I see they also referenced the study I mentioned plus 50 others. Lot of reading here.


  • Mark 506

    Thank you for your reference to the flu jab and your experience in relation to them.

    I think I will give it a miss this year 😉

    Hope all goes well for you ...

  • I absolutely agree but ...

    I was offering my experience as another reason why PMR appears to be MORE prevalent in the over 50s or ... In my case an over 70 who was persuaded that a shingles jab would be a good idea (because of my age) AND that it was perfectly OK to have them both within a few minutes of each other.

    Interestingly ... One year on, the same GP practice insists that the jabs are NO LONGER offered both at the same time !!!

  • Gosh - I wonder why!!! However - I've had my flu shots here in Italy but I have no desire to have the shingles one, never heard it mentioned actually. 

    I only have the flu one because my husband is seriously challenged in the lung department (one removed because of (not lung) cancer and now it has been found he has had TB at some historical point) - the one year he didn't have his flu jab he caught flu and then developed pneumonia which took 6 months to clear up with a few scary CT results in the meantime.

  • Sorry to hear about your husband and can imagine you are both very happy to have your flu jabs.

    It was following my two week hospital stay with bacterial pneumonia in 2008 and resulting COPD that I was told that in addition to a one off pneumonia jab ( as is the shingles jab) that I should ALWAYS have a flu jab.

    Everything has been fine until ... 2014 when I was told that I was in the age group for a shingles jab too !

    When I queried if it was wise to have them BOTH at the same appointment, 

    I was told it was OK as one was a live virus and the other wasn't !

    It was recently that I heard from another patient at the same practice, that one year on, they are no longer offered at the SAME time but insist ... separately !

  • I also got the shingles vaccine just prior to, but not together, with the flu vaccine that preceded my GCA. After reading Dissolving Illusions Disease, Vaccines, and the Forgotten History by Suzanne Humphries, MD

    , I'll never get another vaccination. This is a great book to read. It's a history of disease from 1800 on in Britain and America and the development of vaccines that came after all the diseases were going away due to improvements in sanitation and housing.

    Humphries, Suzanne; Bystrianyk, Roman (2013-12-12). Dissolving Illusions (Kindle Locations 1-3). . Kindle Edition. 


  • Mark 

    Thanks very much for info about this publication.

    It sounds worth looking into !

  • I developed mine within days of a flu shot. I was only 45 and my rheumy still doesn't believe I really have PMR. (But she can't suggest that it's anything else.)  

  • Hi Mjanean 

    I feel so sorry that YOU appear to have been "given" something that you were never warned about ... Just like me. YOU are only 45 too !!! 

    I strongly feel that we should be warned of POSSIBLE side effects of vaccinations prior to us innocently accepting them.

    After all, we receive written warnings about possible side effects of medication we are prescribed ... Giving us the opportunity to make an informed decision regarding acceptance ... Or not !!!

    Best wishes Mjanean and hope all goes well for your final diagnosis and treatment X 

  • It could also be because PMR largely affects older people and people are getting older! Blaming lifestyle implies that this condition is somehow our fault. Personally, for all my adult life I have eaten healthily, been active and lived in the countryside but completely outside my control do have close family members with autoimmune conditions.

  • I agree with you.  BUT there are things that are happening to our environment which we don't even know about.  And maybe ppl with auto-immune diseases are like canaries in the coal mine.  Also, think about it, terrible diseases occurred with industrialization and removal of populations from the countryside and changes in diet and the methods of processing foods.  Things like scurvy, rickets, berberi, pellagra and so forth.  What is lacking in our lives now that is contributing to our illnesses?  I'm not blaming you or myself or anyone.  It's not our fault.  These are things which, because we don't know what they are, are currently beyond our ability to do anything about.

  • Fair enough, but let's not forget that we are better nourished, breath cleaner air, enjoy safer workplaces, get better health care, live in homes with heating and indoor bathrooms, know better how to live healthily, eg that smoking is bad for us, and for these reasons live longer than in the past. Medical science has made huge strides and public health campaigns have eradicated whole classes of disease.  Judging from the link to the Stanford University research below there is a developing understanding of what is going on with autoimmune conditions such as ours as well. I probably have more confidence in those scientists to come up with theories and solutions than much of the anecdotal observations you can read on the Internet.

  • I wish they'd get on with it.  We've waited a generation for safer medication than steroid treatment for pmr!

  • Very true! 

  • HeronNS, this is exactly what my neurologist said, it's amazing that no one has come up with a drug with the benefits of Prednisone and not the side effects or at least not as many and not as severe.

  • Dare I suggest that it's partly because PMR is perceived as a disease primarily of old women?

  • I read somewhere that it used to be called "Elderly Malingering"  haha  And I just read this  .......... patients who have PMR almost invariably have coexistent osteoarthritis......"  never heard this before

  • I think I've had osteoarthritis, or some kind of arthritis, in my neck and feet since childhood, and I had a definitive diagnosis of OA in my fingers when I was 40.  X-rays now show OA present in other places although it seems not to be progressing.  The first time I can recall having symptoms that I now think might have been the beginnings of PMR was ten years ago when I was in my late 50s.  For the next nine years I assumed that the pain I felt, which got acute in 2014, was the OA.  Couldn't quite figure out why I felt pain in my muscles, not my joints, but what did I know?!

  • Forgot to say - you can't control the disease at all, that is an underlying autoimmune process which hasn't even been identified yet, an essential pre-condition to finding a cure. What you can "control" - though saying "manage" is better probably - is the symptoms. Management is achieved using pred to relieve the inflammation that is caused new every morning plus lifestyle adaptation to reduce other problems.

  • Speaking of identifying the process there is a new study revealing more about the mechanism, but of course nothing yet about how to stop/prevent it. If this link doesn't work for you, just search for Dr. Cornelia Weyand (notice no L in last name) Stanford University and autoimmune disease. 


  • One fundamental error in it - "no-one under the age of 50 EVER gets GCA" is not true. It is rare but it does happen. There was a case in South Wales a couple of years ago where a 37-year old died of stroke, caused by unrecognised and untreated GCA, proven at autopsy. There are also some other cases of people under 50 in the literature - also biopsy proven. And that is one test you cannot argue with.

  • I also noticed that error.  In addition, I wonder if they can examine why this errant cell behavior eventually goes into remission for many patients.

  • There is someone on the forum (gbax I think) who has a similar background to me and they said the other day there is some thought that it doesn't always go into remission as has been thought for so long. Of course, that then doesn't account for the people who do get off pred - unless there are various sorts (my opinion) where you have a simple version (off pred in a couple of years), the version whereby it takes more like 5 years and the other one - goes on indefinitely... 

  • Excellent posts and discussion.   A few comments on things mentioned.   Personally I have never had a flu or shingles shot.  I saw a paper on a connection between the herpes virus and GCA which recommended adding a med for the virus to regular treatment (sorry, forget the classification of drug).  Also on another site there was a very good paper showing a correlation between statin drugs and PMR.  I have never taken those.   In 2010 I was diagnosed with Autoimmune Inner Ear Disease (AIED), my first introduction to Prednisone, which left me hearing impaired.   I saw the same doctor this week for a checkup and asked for the consult notes from the doctor who had put me on Methotrexate.   The notes said the diagnosis was a 'vasculitis' and they were doing tests to rule out 'any systemic vasculitis'. No one ever mentioned to me anything about a vasculitis.   I had never really felt well since then and think I've been brewing all this time.

  • Hi again animi 

    Sorry to hear about your hearing (AIED) but interesting to learn that it is also an auto immune condition.  Does it also result in you feeling off balance ?

    I don't know much at all about vasculitis but ... PMRPro will ... 😉

    Take care and maybe we will chat again on here x

  • Hi Polylinc, yes I lost my balance when I lost my hearing. I used to have terrible, terrible vertigo, two presentations - I used to describe them as a slow one in which I felt and looked like a drunk, weaving form side to side, needing to hold onto something or someone, the other type I've heard referred to as a "drop attack", that would feel like someone smacking me across the head and down I would go, in an instant, I had one of these out in a restaurant one time, scared everyone including me. The slow type vertigo would sometimes last for 3 or 4 days nonstop, ...looking back I don't know how I ever got through that diagnosis, it lasted more than two years, lost my hearing but now don't have the vertigo except for sometimes for a few seconds turning over in bed. But I have basically no balance, I will just fall to the side and keep going, and if I feel myself falling I have lost my ability to recover like normal people would. I just have to go with it and land somewhere. The diagnosis wasn't settled on for a number of months, me being told it was just a bad flare of Meniere's which I had had for a number of years. I finally got to THE specialist in a teaching hospital not far and he diagnosed it. The treatment was Prednisone orally but also I had tubes put in my ears and injections of steroids directly into them. Unfortunately nothing saved my hearing but my ears have felt fine since then thank goodness.


  • Hi animi 

    Thanks for you detailed reply and ... Pleased to hear that you are not suffering so much right now.

    I have unbalanced feelings too, but more like having had one glass of wine too many !  Currently knvestigating possible leaky heart valve 😏

    I will check for your next postings and thank you so much .

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