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Can PMR decline over time without taking medication?

Posted , 11 users are following.

GCM1
GCM1

I am a 70 year old male living in rurtal England. I was diagnosed with PMR in February of this year. Pain and stiffness were evident but not such to stop me continuing to be pretty active. I do take occasional painkillers in the morning or evening if particularly stiff and achy. I continue to do yoga and exercise regularly. My hips are stiff and I do have evidence of osteo-arthritis in left hip and right knee.

My consultant said that some PMR can be 'self-limiting', i.e. it can reduce over time without medication. However, he said there was little robust evidence. He advised that I took medication. I have decided NOT to take medication for six months to see how things progress. I am still stiffer than before PMR, I have lost about 7lbs weight and I have less muscle strength. None the less, I still manage a 2 acre garden, fish my local river for trout (climbing banks is tougher!) and try not to be too limited by PMR.

Does anyone have any information about the prognosis for non-treatment PMR? Do the symptoms decline over time? I would be very interested to hear.

GCM1 (I should add this is the first discussion group I have ever joined!)

0 likes, 19 replies

19 Replies

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  • ptolemy
    ptolemy GCM1

    Posted

    Dear GCM1, if painkillers other than steroids work it means that they are helping something other than PMR. Steroids are the only thing that really sort out the PMR pain.

    PMR tends to go into remission usually after several years, although this can vary a lot. By not taking steroids you do leave yourself open to GCA which can cause blindness along with other nasty problems. Why don't you want to take medication for PMR when you are taking painkillers anyway?

     

    • GCM1
      GCM1 ptolemy

      Posted

      Dear All Respondents/Discussants,

      Many thanks for the several and very useful comments. I was genuinely impressed by the considered and thoughtful nature of the responses. It has allowed me to consider more seriously whether or not I should take medication. A number of issues were raised, e.g. inflammation of internal organs that I had not considered. The muscle weakness, tiredness and constant twinges area a pain over time. I also do not know how much PMR exacerbates an exsting condition of osteo-arthritis in my hip.

      I think I will continue to avoid Facebook (while still being highly computer literate). 

      I will make a decision in the next couple of weeks.

      Thanks again to the discussant.

      Gordon (aka GCM1)

       

    • Anhaga
      Anhaga GCM1

      Posted

      I may be wrong, but as someone who has both PMR and osteoarthritis I would say that PMR is completely separate.  I remained undiagnosed with PMR for a long time because I assumed the increasing pain I had was osteoarthritis.  When eventually I started pred all my pains went away, including OA and painful hips.  Reduction in dose brought back those other pains, but hips have been treated by treating my spine (physio) . Turned out it was referred pain, nothing really to do with either PMR or OA in hips (which are about the only parts of my body which x-rays showed do not have OA!
  • EileenH
    EileenH GCM1

    Posted

    I'm delighted to hear there is a specilist out there who agrees with me that only SOME PMR is self-limiting and will go away eventually. The trouble is you don't know at the outset which you are going to be! 

    I'm pretty sure my grandfather had PMR - over several years and it didn't go away. He still ran our small holding and did a lot of garden work as well as pleaching hedges - but I'm pretty sure he was never out of pain and always very stiff. But in the 1950s you developed rheumaticks and that was it. Pred was still in nappies.

    I have had PMR for 13 years. The first 5 were without pred, not from choice though. I managed. And that is about all I can say. I was self-employed and that let me plan my day as I wished and Mon to Fri I went to an aquafit class. Without that I could barely move. As it was I crawled up stairs on hands and knees or hauled myself up with the bannister - and suffered the arm pain as a result. It never faded - but eventually I had a major flare that left me really disabled and since I was stopped from driving for a few months for something else - totally wrongly as it turned out - I was housebound as I could barely walk to the end of the street to the bus stop never mind get on one!

    15mg of pred eventually gave me 6-hour miracle - it might have been quicker but i was sitting at the computer! A GP in the practice agreed it was good enough evidence for her and provided pred - the rheumatologist wanted it to be anyhting but. In the meantime I have had 2 more major flares despite never stopping taking pred and although I have been down to below 5mg I had to go back to 15mg last year and am now back to 6mg (I hope, 7mg is good).

    An Italian study found a third of patients still required pred at 6 years - and some experts have said while 25% are off pred in a couple of years they are at a higher risk of relapse at come point, about half take up to 4 to 6 years and the other quarter take longer or never get off pred at all. Although I have heard of people getting off pred after 11 years - I'm assuming I'm in that last 25% and I'm not too hopeful I can say goodbye to pred. But life is fairly good on 6mg - and far worse things happen at sea.

    I think it is very likely that there are people who can manage to live with their PMR. I did - but I wouldn't want to go back there. If I KNEW it would be gone in a couple of years that would also be fine, but I know that isn't guaranteed and I'm a jam today girl - I'd like to be able to live now. You are a long time dead...

  • julian.
    julian. GCM1

    Posted

    I don't know of any info on pmr progression without treatment, but that doesn't mean there isn't any.

    Out of necessity I kept going undiagnosed for about 4 months. While the "screaming pain" was manageable I doubt I could have waved a fly-rod around as I couldn't lift arms above shoulders unless I used one to lift the other. Hauling a tee-shirt over my head was like watching someone performing a long jump .... minutes of mental rehearsal followed by a short flurry of action. Not an easy feat and way out of the medal hunt.

    Over the last three years I've formed the impression that the stiffness and pain which are the symptoms of pmr vary between individuals. Which allows some people to carry on without treatment and others to be significantly restricted even with treatment.

    I did have a concern with under treatment. PMR appears as inflammation. I pondered the long term effect of unrelieved inflammation but have not found any definitive information. Just that it didn't seem like a good idea to leave it untreated. And a few hints of increased risk of heart problems.

    Even with the pred I found the mental effort required to remain positive as I came to terms with the seemingly inevitable changes in lifestyle. Chronic illness of any form can be mentally quite wearing.

    I keep as active as I can. At one time, even with pred, walking to the end of the street left me wondering if I could walk home. I'm now back to enjoying walking long distances up steep hills (bush walking / hiking / tramping / whatever ...). But I still have to pace what I do - Monday's couple of hours chain sawing can't be repeated until Friday. Pre-pmr all day for a couple of days was normal. General strength, muscle tone, fitness and stamina are nowhere near pre-pmr. But improving.

    In general it seems that medication, activity/exercise and diet (as with most chronic issues) are all components of treatment. Even with medication the lifestyle changes can be significant. And did I mention pacing.

    I suspect maintaining activity/exercise is fairly critical. I find the sort that keeps my blood flowing rather than heavy lifting can help clear some stiffness. But overdo it and I suffer. The stiffness of pmr is very different to the stiffnes from exercise, and I prefer the latter.

    Not definitive really, just personal experience and observation. I hope it helps. I wish you well.

    • EileenH
      EileenH julian.

      Posted

      A top German cancer expert discussed the long term implications of unmanaged inflammation with me at a science meeting - as in untreated PMR. He was adamant that it is likely to contribute to an increased risk for certain cancers over time. Since it is very likely to be affecting the blood vessels there must also be a degree of damage to them - and there is an increased risk of developing peripheral vascular disease in PMR (i have read it in the medical literature, don't ask for the reference though I'm afraid). There is a limit to the management of PVD as it tends to progress.

    • julian.
      julian. EileenH

      Posted

      I suspect there's a clue in "managed".

      I think of "managed" as medication, activity/exercise, diet, and other lifestyle changes.

      In my case the symptoms of pmr were such that while I could (of necessity) carry on without medication I was significantly limited and in a downhill spiral of lost activity, lost muscle strength, and increasing fatigue.

      Three years on, with medication, and I'm still improving, reasonably active, but nowhere near at the pre-pmr level. I'm also older.

      But for me that doesn't mean that there aren't cases where the symptoms are such that "carrying on" is less of an effort. That the symptoms can be managed with activity/exercise, diet and lifestyle changes without the necessity for medication.

      I'm still puzzled by my time in coronary rehab which was mostly supervised/monitored exercise. My concern was that it would precipitate a pmr flare. The outcome was the opposite - reduced stiffness/pain and fatigue. My simple picture, with no research evidence, was that increased blood flow helped remove from my system whatever was causing the inflammation.

      Of course I soaked up the gains by reducing the medication .... and I'm lousy at maintaining exercise regimes.

      I assumed that GCM1 meant "manage" without pred. In its broadest sense.

      By the same token I can't imagine (with very little evidence) that unmanaged inflammation doesn't have any adverse effects on the body. Be it increased risk of cancer, or heart issues, or vasculitis, or ... etc.

      The pred side effects were part of being between the proverbial rock and hard place. Between pred side effects and pmr symptoms. Fortunately my dose is now sufficiently low (3mg/day) that I'm probably somewhere between only vaguely aware of side effects and imagining them.

      There's no win-win in any of this.

    • EileenH
      EileenH julian.

      Posted

      I don't think the exercise "removes" the inflammation - I think the increased blood flow due to the exercise improves function. The inflammation can still be there, still be limiting the blood flow, but vasodilation brings the blood vessels back to closer to their normal diameter and blood flow improves. I found pre-pred, that exercise left me more mobile - and so did a glass of wine. Which also induces vasodilation. Some people find warmth helps - it also induces vasodilation. Other aspects are also improved by vasodilation and increased blood flow - supply of nutrients and removal of metabolites being just two.

      We know that moderate exercise of the right sort improves function - the secret is getting it right and carefully supervised and selected exercise should be part of our management. The recommendations SAY that - but it NEVER happens.

      Here on the forums it is very difficult to explain what we mean by resting and pacing. But it doesn't help if you rush in to exercise and overdo it, especially in the early stages of PMR. It also varies a lot both between patients and for a given patient at various stages of the disease course. I walk for 1/2 hour almost every day - and I notice a big difference if I miss it. But many of us have other constraints - not least healthwise and time wise. 

  • amkoffee
    amkoffee GCM1

    Posted

    There is a second reason to take the prednisone other than to control the pain. With PMR you have a lot of inflammation in your body that inflammation is what causes the pain in the joints and muscles. And by taking the prednisone that helps to reduce the amount of inflammation in your body . But the inflammation is not just in your joints and muscles it is also in your organs and blood vessels and in other parts of your body. There are a lot people who want to go through this without prednisones and that is your choice but I think you need to have all the facts before you make that decision. If you do not choose to take prednisone I suggest a group on Facebook for people with PMR that choose not to take prednisone. If you Facebook at all I would suggest you join that group because you may get information from other patients on how they handle it without the prednisone.
    • Anhaga
      Anhaga amkoffee

      Posted

      I was on the FB page for a while because i genuinely wanted to learn strategies which might help me get off and stay off pred.  I had to leave the group because when I asked questions I was jumped on as they thought I was simply a skeptic.  it was a nasty experience.
    • amkoffee
      amkoffee Anhaga

      Posted

      Well that's good to know. I will need to reconsider whether I will recommend them anymore. I belong to the group more for curiosity sake then anything else. But I can't say I ever left a comment .

    • Anhaga
      Anhaga amkoffee

      Posted

      A friend suggested maybe they were in such pain it made them cranky!
    • Anhaga
      Anhaga amkoffee

      Posted

      What I wanted to know were things like how long and what level of pain - because as you know, this can affect how one views natural treatment!
    • Rudivl
      Rudivl Anhaga

      Posted

      Do you have a link to the FB page?! I'm curious now!! 

       

    • amkoffee
      amkoffee Rudivl

      Posted

      The group is called Surviving Polymyalgia Rheumatica without prednisone
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