What on earth triggers PMR?

Hello,

I just found this group! Hurrah! I was formally diagnosed with PMR by a rheumatologist yesterday. However as I am only (!) 55 I'm very confused at what may have kicked this off? I did break my wrist a couple of months ago and the PMR pains started one night whilst I still had my wrist in a plaster cast. Could the stress of the broken wrist have been my trigger? Otherwise I'm totally confused as to why I've developed this? Thanks so much for any comments.

22 Replies

oldestnewest
  • Yes, it's very common for a stressful event to trigger PMR. It's often a final straw after a number of things which apparently we've coped with fine. Welcome to this club which no one wants to join.

  • Thank you for your reply.

  • Who knows! My father had it at about the same age as I got it and I can't see any common factors. Likewise a good friend had it about 16 years ago and I still can't see what common events/illness/accident might have triggered it. It appears that those of us of Northern European ancestry are more susceptible to PMR, so perhaps we can blame our genes.

  • I don't think it's worth worrying about the cause of your PMR, no one knows the definite answer. However, you are fortunate to have found this site at the start of your journey, and the best thing you can do is to spend some time reading the posts and learning about this nasty illness. You will find much valuable advice from fellow sufferers and do try to be positive, there could be worse things to have.

  • With due respect to you slewis for me its been hugely important to investigate, research & best understand the reasons behind why I have succumbed to such a life changing multi-factorial illness.

    I want to be forearmed with every ounce of information to understand how to go forward with my recovery. Knowledge is power & some of our medical professionals are not as proficient as some of the folk on this site - they too have asked a myriad of questions & tapped into research plus mixed with those in the know.

    Blessings :)

  • Because there definitely seemed to be a stress trigger for my PMR I do what I can, now, to avoid stress, or at least to not let it affect me too much. I agree the more we know the better, although there is also the adage about knowing what we can change, what we can't and having the wisdom to know the difference.

  • Hi

    Welcome you will find lots of support and help on this site .

    PMR is a Autoimmune illness and like most of them stress of any sort does not help. lets face it most of us lead life's with stress in it Family, work, finances, health the list is endless.

    One important thing I have learnt is look after myself and put myself first .Not selfish but a necessity with PMR.

    Take time out every day to rest and pamper yourself .

    Rose

  • Hello Ms Mac03..Stress is definitely a major factor in PMR and I was blessed with it 13years ago after a bad fall and an Operation to my right wrist and hand due to a Fracture, I was 58 at the time and working..my late mother also had PMR and a neice in my Family has it and she is in her early 50s so it does seem to be Hereditary as well. I have found that PMR has a mind of its own and Definitely likes a quiet life ..Hope All goes well for you and it's a short lived PMR journey for you ..Best Wishes trish 29

  • Hello Mrs Mac!

    My doctor agreed I had PMR last Wednesday after a week of pred although I had already known that was going to be the answer back in June thanks to this site and reading loads of academic papers. Just needed someone to prescribe those 15mg to prove it. I'm off to to a rheumatologist in December but don't suppose that will be of any special help. I think my doctor just wanted it to be official - she's very young.

    My PMR started with my lifting something stupidly (a bag of matgs books lol) at Christmas and I developed a frozen shoulder from a torn rotator cuff. By the end of the summer, I was having to plan what to do first in order to roll over in bed... Now, with magic pred, I can do everything I ever could. A specific example is stapling paper together. Who knew that would be a triumph? My wrists and knees were affected by bursitis from the PMR and I couldn't write properly or get on the floor to clean the cat litter tray out etc.

    Anyway, to answer your question, I had been working flat out and on call to my learners 24/7 for months and it became far worse in the spring. I know this sounds silly but I'd been encouraging my immune system to work vigilantly to stop me getting ill. Now I'm telling it to relax and have a rest while the pred takes over for a while - which is also what I'm doing in a macro way as much as I can afford to. Less hours more rest etc.

    I have my pred with a banana first thing in the morning and it feels like a treat - I realised it was breakfast in bed!!

    Incidentally, I know they say it's sudden but I think this may have been brewing sub-clinically for years. I was investigated twice re rubbish sleeping and no-one could find anything wrong although I had a feeling that I wasn't moving much in my sleep, and I was getting subtle stiffness when sitting still for too long etc. I have been sleeping like a baby since pred arrived.

    Although prednisolone is my new best friend I know how body-wrecking it can be as my dad died from the very long term, high dosage use so I am stuffing in magnesium, vitamin k, cheese to boost calcium and vit d oil and avoiding the PPI I've been offered. My choice is to focus on stopping osteoporosis developing and not to worry about potential stomach troubles unless they turn up.

    I feel very lucky that the only bad side effect so far of pred has just been a slight seasick feeling like too much coffee. Mostly I feel better than I have done for years - long may it last. Next challenge will be creeping down the dosage but there's a wonderful detailed explanation of how to do that on this site.

    I felt like I was 85 before pred and now I'm back to 63 going on 34 (just had to interrupt this to run downstairs for the postman).

    Just now, my main concern is all about dyeing my hair without wrecking it because of the pred.

    For me, PMR is my body's way of complaing I've not been taking it into account for years .

  • Hi qn,

    You won't wreck your hair through Pred. If it is wrecked it's because you've been ill for a long time without realising. Mine got very thin and lifeless prior to diagnosis, and I must admit it took some time to get back to normal, but now it's back to its former glory.

    Just make sure your hairdresser is aware you are on Pred, but most of the colouring agents now are much more gentle than they used to be. And a good hairstyle makes everybody feel better doesn't it?

  • "as I am only (!) 55 I'm very confused at what may have kicked this off?"

    That doesn't count as particularly young - even the guidelines say "over 50" and the patient representatives did push to have a lower age cited. I was still just only 51 when mine started although it wasn't diagnosed or treated until I was nearly 57 - 5 years of managing it myself. There are quite a few people in their late 40 and early 50s around.

    What causes it? It is an autoimmune disorder, something upsets your immune system and it turns on your body attacking various tissues in error, not recognising it as self. It is felt that while stress plays a part for many people, that is because stress affects your immune system adversely. There are myriad possible stressors for the immune system and eventually one is the straw that breaks the camel's back - and one autoimmune disorder or another appears. They may be environmental, chemical, infectious, emotional, traumatic - no one thing does it, it is a combination of all sorts of things together with a probably genetic tendency. It is felt to be more common amongst people with a Scandinavian heritage. It is more common the further away from the Equator you go, far more in northern Europe than in southern Italy or Spain for example, although it does occur in both places and two of the bigger research groups are in those countries.

    It may sound a bit unsympathetic, but if you have to have an autoimmune disorder then PMR isn't a bad one to have! It doesn't kill and it does burn out and go into remission for about 75% of patients in 2 to 6 years. A few of us have the joy of being on pred for longer, a few for life, although some of the people on pred for life are on it not for PMR per se but because of poor adrenal function. Has that anything to do with PMR? No-one knows, maybe, maybe not.

    The one thing to really watch out for is any symptoms of GCA, giant cell arteritis, which is related in some way and PMR can be a symptom of it developing. The usual signs there are headache, visual problems, jaw pain when chewing and feeling fluey - there are others but they are the main ones. If anything like that starts - check with your doctor immediately, just in case.

  • I am 57. I know this started 5yrs ago for me also. I went to urgent Care for a definitely different severe headache. Had migraines since I was 4yo & this was not a migraine. Doc was busy with other case, gave me ctscan & hydrocodone.

  • No proof of course, but I feel stress was my trigger for PMR. I took care of my mother for her seven-month decline --- with multiple emergencies and hospitalizations --- until her death. I barely slept and ate poorly. I'm self-employed so if I didn't work I didn't earn, so that was even more stress. I clearly remember thinking that while my mother was the one dying, I was honestly not sure I would survive as I felt so ill. About four months after she died the PMR blossomed, though I was not diagnosed until my rheum appointment three months after my first symptoms. Someone else here mentioned they thought they had sub-clinical symptoms earlier on. I certainly did, mostly stiffness that made it hard to stand after sitting a while, and fatigue that drove me to frequent napping.

  • Frequent napping after she passed away. During her illness was the time I barely slept. I need a nap now!

  • I agree with others who say the cause is unknown, but stress certainly seems to aggravate/trigger it. However two points I have learned about "cause/risk" are: 1) having the HLA-B27 gene (as simple blood test can reveal that) and 2) the drug sheet for the statin "ZOCOR" (simvastatin) now lists an "apparent hypersensitivity syndrome has been reported rarely which has included.... polymyalgia rheumatica..." It did NOT list that in 2008 when I suspected it, but it does now. If you took ZOCOR in your past it might have contributed to your PMR. If you're currently taking it, I suggest you show the drug sheet to your doctor and ask for an opinion on whether to try something else or even stop it all together.

  • HLA B27 is associated with Ankylosing Spondylitis ( 90 % of patients with AS carry the gene ) but I have never heard of an association with PMR.

    Can you cite your evidence source please?

  • I found this, which seems to suggest it's a different gene. ncbi.nlm.nih.gov/pubmed/889...

    But is was a fascinating search. I didn't read the following article fully, just searched for the gene name, but it seems to be one which describes how to make differential diagnoses, some illnesses present as PMR but have lower than expected response to the steroid treatment for example. How many people on this and other forums complaining that their pain is not properly relieved by pred really have something else either instead of or as well as PMR?

    researchgate.net/publicatio...

  • HLA has many subtypes. HLA B51 is associated with Behcets Syndrome ( a rare variant of Vasculitis ).

    I had a Polymyalgic presentation of Ankylosing spondylitis. It took me a long time to get my AS diagnosis partly because I presented atypically and partly because the prednisolone masked my symptoms for 2 yrs.

    As you say fascinating stuff!

  • Keyes and PMRpro ,

    Well I looked, and I can't find a source to cite. I think I had a misunderstanding from what my rheumatologist explained when he was diagnosing me 5 years ago. He tested me for the HLA-B27 gene (I confirmed this in my online medical record) and I do have that gene. I thought he told me it indicated a higher risk of auto-immune disease and I took that to mean PMR when that was the final diagnosis. (There has been little doubt about the diagnosis. Within a year I developed GCA with all the classic symptoms even though a TAB could not confirm it).

    I appreciate the scientific rigor of this forum as much as I appreciate its supportive nature, so I have no problem with being enlightened on this subject :-)

  • No problems!

    I am HLA B27 positive. My symptoms were " classic " for PMR/GCA ( I have a thoracic aortic aneurysm as well ) but my diagnosis is actually spondyloathropathy.

    10% of the population carry the gene.

    I responded to pred even though I don't have PMR etc. AS can present very differently in females. I do think it is one of the PMR rule outs.

  • If it isn't - it should be...

  • Like Keyes I'd be interested in your source.

    ncbi.nlm.nih.gov/pmc/articl...

    which is pretty comprehensive doesn't mention PMR and the link

    ncbi.nlm.nih.gov/pubmed/889...

    which Heron quotes says:

    " In PMR patients the frequency of the HLA-DR4 antigen was significantly higher (62.1%) compared to blood donors (40%), p < 0.05, but did not differ from patients with seropositive rheumatoid arthritis (RA) from the same area (63.1%). In contrast, the frequency of HLA-B27 in the PMR patients (9.3%) was significantly lower compared to RA (27.2%), p < 0.01, but did not differ from blood donors (16.9%). There was no association between DR4 and disease affliction or severity in PMR. The increased frequency of HLA-B27 in RA but not in PMR in the population of northern Sweden suggests an immunogenetic difference between these two HLA-DR4 associated diseases."

    Which I read as saying there is no real sign HLA-B27 is associated with PMR since its occurrence is a PMR population is the same as in a presumably normal and healthy population.

You may also like...