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PMR under 50 years old?

Posted , 13 users are following.

Kazz62
Kazz62

Has anyone under the age of 50 been diagnosed with PMR?

1 like, 30 replies

30 Replies

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  • EileenH
    EileenH

    Posted

    Kazz - just to back up MrsO's post. The pred hasn't cured anything and what youa re now doing is looking for the dose that will continue to control it. I've had PMR for 8 years altogether, 5 years not dx'd and was only 52 when it started. I'm on the equivalent of 10mg/day NOW. That's not to be depressing by the way.

    I responded to pred just like you but was made to reduce to 10mg after 2 weeks which wasn't too bad - and then to 5mg 2 weeks later which wasn't good and was off altogether 2 weeks after that - and then it was all back and almost worse than at the start. The rheumy didn't think it was PMR, he wanted it to be psoriatric arthritis too. Mt GP agreed it sounded more like PMR and was happy to provide the pred - but I have not managed to reduce as easily since then as that very first time. It is recommended by top experts in the US that any reduction should not be more than 10% of the current dose so that would be 1.5mg at present - but most people do get away with 2.5mg at that level. I haven't looked recently - but something also tells me at the back of my mind that the Rheumatology Association guidelines suggest more than 2 weeks for that first 15mg dose and monthly reductions. It depends on the amount of inflammation - the more there is the longer it takes to get it all under control and if your blood levels are raised they may be useful to see how things are proceeding. It's such a shame to spoil the ship for a ha'peneth of tar :-)

    all the best - do tell us how you get on!

    Eileen

  • KfromUSA
    KfromUSA Kazz62

    Posted

    Your thread from over a year ago greatly helped and encouraged me, as I have just begun researching PMR due to my own sudden onset of stiffness and pain in both arms, following diagnosis of early arthritis in the knees. I will be 50 this summer. Your humorous comment about finally not having to shuffle around like an extra from Planet of the Apes brought much-needed laughter in the midst of pain! Thank you for starting this discussion in search of answers yourself, and I hope you are doing well at this time. Thanks to all of you "across the pond" for sharing the British Society of Rheumatologist guidelines, warnings about tapering the medication, etc. All valuable for what of course would be nice not to have to deal with at all. But God is good, and I guess this might be part of living out the Biblical phrase, "When I am weak, then am I strong."
    • EileenH
      EileenH KfromUSA

      Posted

      There is a lady on one of the threads from the USA (California I think) who is very much younger, in her early 40s perhaps. It is slowly becoming obvious that there are younger patients who are ignored or told they have fibromyalgia who are therefore missing from the statistics. I was 51 when my PMR first started, there is one lady on another forum who has been told she can't possibly have PMR/GCA because she was only in her late 40s when it started, one of the top guys in the UK finally admitted she had "atypical PMR" when she was shown to have inflammation in the right places and it responded to pred. Now another top PMR/GCA research consultant has said it is definitely a large vessel vasculitis, probably GCA. It's only take over 3 years to get that far!

      It pays to be assertive, have all the background stuff to hand and seek a doctor who is willing to treat you as an equal in discussions about diagnosis and treatment.

      For a lot of good, reliable info follow this link to a post with a whole load of links:

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

      All new posts with links are moderated - this is an allowed link ;-)

    • Heyyady
      Heyyady EileenH

      Posted

      That would be me- I am 41 and first presented at 39- It took my doctors awhile to land on PMR due to my age- but thank goodness they finally did! I've only been diagnosed about a month and a half, and have had to increase my pred. from 10mg to 20mg,but it has made all the difference in the world to me and my family!  
    • EileenH
      EileenH Heyyady

      Posted

      Please please please ask your docs to write a communication about you and publish it! A group of us in the Uk are absolutely convinced that not only is the incidence of PMR increasing but people are also developing it younger. There are also a lot of patients like you who are unlucky enough to develop PMR and not find a good broadminded doctor and get labelled with anxiety, depression, menopausal, fibromyalgia and so on. They suffer for years for no good reason. Being on pred at 40 is no fun - but it beatrs the alternative!!!!

      There is a thread for contributor's stories - do please put yours there so I can find you easily ;-)

  • DougR
    DougR Kazz62

    Posted

    I'm 49, and have been fighting symptoms and diagnosis for about 15 years.  Mostly my issues have been joint related, but this last year my muscles have been attacked.  If I'm moving around I'm ok, but if I sit for awhile, especially if my legs/arms get cold, or lay down, or sleep, my muscles feel as if they are tearing apart, and have no strength whatsoever.  Last week for 3 days I couldn't lift my left leg at all.  I was told 12 years ago I had RA, but now they are saying it's PMR.  I guess mostly inflammatory diseases all are about the same just effecting different areas.  I've been on a low dose of Prednisone, 10mg, for about 10 years off an on.  I've done dose packs a few times which seem to help but the last time it didn't do much, so Doc is skeptical about trying again this soon.  it's frustrating for sure!  I found that circulation massage seems to help, but i found out the hard way deep tissue did not!!  ouch.  Felt good during but for a week after I was way worse.  I'm now doing weekly massages and have felt much bettter.  Still weakness, but more tolerable.  Has anyone found anything else that helps?  Thanks in advance for any info.
    • EileenH
      EileenH DougR

      Posted

      There are other things that produce similar symptoms to PMR and I had what was probably the herald syndrome of ME/CFS in my late 20s. I fitted all the criteria they now quote for myalgic encephalomyelitis - also known as chronic fatigue and immune disorder. I had raised liver markers then which later normalised when I was better - I was lucky, it lasted something over 6 months but the fatigue remained for a few years. I don't have raised ESR/CRP - but have had raised liver markers during flares of what is agreed by my doctors to be PMR.

      "Packs" of pred - so popular in the US, are not the right way to manage PMR and repeated use of them leads to a yoyoing of the dose and in some ways the body seems to become resistant to their effect. 

      The massage effect may be because you have something called myofascial pain syndrome - cause by the same inflammatory substances as PMR but they are found localised in areas of the muscles rather than systemically as in PMR. Massage releases them into the circulation and they apparently cause a flare of PMR until they are washed out of the system. It is a common phenomenon in several complementaty therapies that do seem to have an effect, including massage and/or manual mobilisation of the trigger points and Bowen therapy which I and others have used successfully to deal with these "add-ons" to PMR. 

      In PMR you have to start with a higher dose to clear out the existing inflammation, about 15-20mg/day has been the suggested level although the most recent recommendations say up to 25mg, and then you reduce in small stages, not more than 10% of the current dose and preferably even smaller, to find the lowest dose that gives the same result as that starting dose did. Every day a new batch of the inflammatory substances are shed in the body - the daily dose is about neutralising their effect every day and not allowing inflammation to build up to a level where it causes symptoms again. But first you have to get it under control and empty the bucket.

    • DougR
      DougR EileenH

      Posted

      Thank you for the info. I guess I need to talk to doc about bumping up prednisone some to try. I've been on 5-10mg for quite a few years as it helped with my joints. Probably saying I had RA, high sed rate and RA factor. But then the muscles hit this last 12 months.

      I didn't realize that it can go into "check" for awhile. I just assumed my mornings were going to be hell the rest of my life. Right now I can barely pick up the weight of the creamer bottle for my coffee! Thanks again for the help.

    • EileenH
      EileenH DougR

      Posted

      What are you on for the RA? It is possible to have both - and there are other things that can mimic it. PMR is just the symptoms of an underlying disorder and there are several - including, amongst other things, forms of colitis, cancers and vit D deficiency and a load more, all of which should be ruled out before coming to the conclusion that it is the PMR we talk about on here.
    • DougR
      DougR EileenH

      Posted

      Don't have much time before heading to work, but they have tested for just about everything. Few months ago the last set of bloodwork was 11 vials, 3 of them the large ones. They made me sit there for 20 minutes after drinking koolaid and gave me a candy bar lol. My RA symptoms have always been swollen painful joints, worse in morning, usually getting much better after a few hours, not so much the last year. Prednisone has been the course of action because I wasn't showing other symptoms to warrant biologics. Part of the problem was I moved able half way into going through different things, new state, new doc, took me 3 years to find a doc that would help. Kept getting the "oh you are too young, you don't have it" I have no idea if what I have is PMR or something else, but we have a few things left to eliminate, ms, which I don't think it is, I have a few friends with it, not that it isn't different for everyone but just don't seem to for the profile. Well it's time to start the getting ready for work workout lol. Thanks again and check in again later today
  • carleah13
    carleah13 Kazz62

    Posted

    I am 23 years old and today have been given a diagnosis of Polymyalgia rheumatica and possible early stages or rheumatoid arthritis. So yes I guess it is possible. Would love to find some other younger people with PMR.
    • EileenH
      EileenH carleah13

      Posted

      You won't find many people of your age with a diagnosis of PMR - it is felt by almost all rheumatologists to be a disease for over 50s. We do have a few on the forums in their 40s but relatively few. I do know of people with GCA, a related illness, who have been in their 30s - that is one thing that can be proven in some patients, though not all so there can be no argument. There is no test that can confirm PMR at all, and the one for GCA is only positive in ablut half of patients.

      Who has made this diagnosis carleah? If you have PMR symptoms then at your age it is far more likely to be something else - I'm not saying it isn't PMR, just that what we call PMR is the name given to the symptoms of an underlying disorder and there is a wide range of such things that must be eliminated before deciding it is the PMR we discuss here. 

      Apart from anything else, if there is a possibility of RA then the PMR is more likley to be associated with that than be the PMR we discuss here which is a vasculitis rather than an arthritis. Or, if it is a vasculitis you have - then there are several that are found in young people but which are managed in different ways. The PMR we all have only responds to corticosteroids - nothing else really helps - but others respond to other drugs which is a positive.

      If your doctor REALLY thinks it is PMR - I would be asking for a second opinion. On the other hand - how is this doctor intending managing you?

       

  • dboza
    dboza Kazz62

    Posted

    I had what was an undiagnosed flare up of PMA about 21 years ago.  I was told by a rheumatologist it was probably caused by a virus. I was given very strong NSAIDS for the pain. It eventually went away when I spiked a fever of 103 farenheit when I had the chicken pox. I had it flare up last November (2015) and was diagnosed with PMR and treated w/ prednisone. Immediate relief. I just finished a course of the drug. Both times I had the flare ups, I had contracted strep throat. A few weeks later the PMR symptoms appeared. I am sure my first bout was PMR. Auto immune diseases run in my family.
  • pamela19292
    pamela19292 Kazz62

    Posted

    Hi - I see that there has not been a lot of activity on this page for the past year but I am hoping I will get some feedback.  For the past 6 months I have had a moderately elevated CRP level and ESR, pain and stiffness in hips, feet, neck and sometimes elbows - some days it is hard for me to get down the stairs in the morning and I am frequently tired.  I have been tested for Lyme, RA, Hashimotos, Lupus and Vascultis and menopause (all my ovarian function was tested).  Thyroid has been tested several times.   GP sent me to a rheumy.  The rheumy he referred to retired. Found one through insurance who did a CBC, ANCA Panel and UA  (all totally normal) and told me there was no rheumatological reason for my elevations and to get a chest, abdominal and pelvic CT to rule out malignancy and a pair of Birkenstocks.  My ESR was in the 49-55 range (so not terribly elevated - CRP 9-10) (tested three times) and my CBC and UA was totally and completely normal.  Anyhow, I just turned 46 and he told me I can't have PMR because I am not 50.   My GP initially suspected PMR (found out after I shared my CT referral)  and I am now seeking a consult at Johns Hopkins before I undergo the CT. Besides the notion of a screening for malignancy being scary - the CT seems sort of unnecessary at this point - given the fact that I show no other signs of malignancy at this point. It is very frustrating and I can't help but to think that the percentage chance of me having PMR, despite my age, is greater than the chance of having an underlying malignancy. I am just concerned I am going to have to deal with this for the next four years UGH!  How much damage does the actual inflammation do to your body in the long term?  I am not even sure Hopkins will see me - you have to send your records before you can get an appointment.  GP said he is not comfortable diagnosing me because he does not see enough PMR cases.  Sorry for the rambling - just wanted to share with people who may have been through this.

    • EileenH
      EileenH pamela19292

      Posted

      The guidelines say that over 50 is the point at which you should be considering PMR as a diagnosis - but there are doctors who still believe you have to be in your 70s to have PMR and GCA. But the "over 50" doesn't mean it doesn't happen in under 50s and there are several people on the forums who were either diagnosed in their 40s by experts or who were diagnosed in their 50s - long after the symptoms had appeared. I doubt whatever caused them changed magically on their 50th birthday! The same applies with GCA, the more serious associated disorder which can affect sight. There are documented proven cases in people as young as 37 and several in their 40s. If that happens - so can PMR.

      Mine started at 51 - but wasn't recognised until I was nearly 57 and even then it was disputed by a rheumatologist despite a textbook response to 15mg pred where I was almost back to normal movement in 6 hours. Since then I have seen 3 different doctors where I now live who all agree it is the most likely diagnosis.

      I'd had 5 years of unmanaged inflammation - has it done any damage? I don't know to be honest. I also have atrial fibrillation which the cardiologist believes is due to the underlying autoimmune disorder that causes the symptoms we call PMR. It is unlikely though that that would have been prevented had I been on pred sooner. Pred doesn't affect the underlying cause at all - it just manages the symptoms to allow a better quality of life in the meantime until the autoimmune part burns out and goes into remission, which it does within up to 4 to 6 years for 75% of patients. 

      The unmanaged inflammation - chronic, not acute - can cause damage to blood vessels although the increase in risk is greater for the patient who has GCA rather than "just" PMR and that damage could put you at increased risk of cardiovascular disease later. PMR isn't associated with an increased mortality - though of course that will have been assessed on diagnosed patients who will have been on pred. 

      I'm rather appalled at your rheumy's attitude - and it does confirm my opinion of US medicine. So there is no rheumatological reason - I hope he qualified that by saying "yet" or "that I can find". An ESR that is persistently around 50 is considerably elevated (normal should by any standard be well under 30 and preferably 20 at your age) and should be ringing alarm bells in a 46-year-old. Once, could be a cold. Twice, could be something else. Three times? No, that requires some thought.

      I don't know - but I suspect if you were to get an appointment with JH, they too would do a CT. PMR is not the disease per se, it is the outward symptoms of an underlying disorder and there are a lot of options. Some are rheumatological but they also usually are accompanied by other symptoms and blood markers, some of which the rheumy has checked already (didn't seem a lot to me but hey-ho, I'm just a patient) and one of the underlying things can be malignancy which should be ruled out. So why not get the CT done in the meantime? I assue it will be paid for by your insurance under the circumstances? Many of us would have been happy to have been offered one - though a PET-CT or PET-MRI would be more useful in looking for possible PMR and they aren't offered routinely in the UK as they are so expensive.

      In the UK a GP who was confident of their suspicion would be able to manage you - although the recommendation is to refer young patients just in case - and would try a moderate dose of pred. This doesn't seem to happen in the USA so you appear to be in the power of specialists who probably look down their noses at "just" PMR - it seems a common attitude.

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