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How long does polymyalgia last?

Posted , 8 users are following.

barb101
barb101

I came off of Prednisolene in May after three years of treatment for Polymyalgia.  All the stiffness and pain is coming back over the last few weeks.  I am reluctant to go back on steroids even though they were absolutely miraculous.  What I can't understand is that I was told the polymyalgia just burned itself out but mine seems to have rekindled!  Has anyone been on steroids for more than 3 years?( I'm also taking warfarin).

 

1 like, 9 replies

9 Replies

  • cat_lady_66
    cat_lady_66 barb101

    Posted

    I have been on steroids for 3 years -just - and have had a break for about 6 months but the PMR came back and very suddenly.   I the went on steroids again starting with a high dose and reducing........having a maintainence inthe end....I then Had to up the tablets again and reduce .    My consultant and I decided 'not to take any more steroids'. ...... Thank goodness....... But this didn't last for long, I am now on 7mg maintainence doese again .........I am in Sept going to see my Consultant agin and I have decided that I am not going to take them any more.....I aso have Psoriatic Arthritis .........

     

    • barb101
      barb101 cat_lady_66

      Posted

      Thank you. I think the burnin out is just wishful thinking. 
    • EileenH
      EileenH barb101

      Posted

      No - that is defeatist! I know quite a few people who have got to zero pred once they were able to reduce in small enough steps at the end. It does go away in the majority of people - just not as fast as many doctors would like you to think. The people on the forums are probably unusual in being the worse cases but I have only met a couple who were off pred successfully in 2 years, one with GCA, one with PMR. It does happen - but not often. But be patient - it does get better.
    • barb101
      barb101 EileenH

      Posted

      Thanks you ve been really helpful.  I think because I had the temporal arthritis with it I get really panicky at the thought of it all recurring
  • cat_lady_66
    cat_lady_66 barb101

    Posted

    I dint know that it could Burn Out, if that's the case it hasn't with me 

    if you have any more info that would be a help,,,,,,,,,, thank you.....

     

  • EileenH
    EileenH barb101

    Posted

    I've had PMR for 10 years, the last 5 of them on pred. I was hoping I might be on the home straight but I'm far from sure - I'm on 4mg at the moment for the first time in those 5 years. You can't tell that it has burned out as long as you are on pred - for some people even 1mg is enough to keep it at bay. If the activity is low it will then take a few months for the level of inflammation to get to the noticeable stage - but I know a few people who were on 1/2mg/day or so (or the equivalent such as 2.5mg on 1 day in 3) and were encouraged to try flying solo but had the same result as you.

    About 25% of patients are able to get of pred in under 2 years but are at the highest risk of a relapse some time later. 50% or so get off pred in 4 to 6 years and the other 25% need a low dose of pred for a long time, sometimes for life. I actually don't know many people who have got off pred in the claimed 2 year period, most are 4 years or more.

    Most people with PMR do eventually get off pred - and it is because the autoimmune part has gone into remission without the use of pred - there are 2 sorts of remission, natural and medication-induced. By the time you are on 5mg the side-effects are usually minimal - there is still a minor risk of loss of bone density but not being on pred leaves you immobile which is also a big risk factor for osteoporosis and in pain which is a risk factor for depression. The ongoing inflammation is also a contributing factor in vascular disease and some cancers.

    You have the choice: accept that the underlying autoimmune disorder HADN'T burnt itself out, it was still there at a level that a low dose of pred was controlling, or put up with the pain and stiffness which is likely to increase as time goes on.

    • barb101
      barb101 EileenH

      Posted

      Thanks for your reply. I'm going to have a blood test test but I'm pretty sure it's back.  I think I am going to go with the steroids because the pain and stiffness just ain't doing it for me. But thanks again you've confirmed what I was thinking.  I think doctors tell you want you want to hear and not always what's likely.

       

    • EileenH
      EileenH barb101

      Posted

      Beware - sometimes the ESR and CRP don't rise again in a flare/relapse. Or they take a long time to rise - they do tend to lag behind, just the first lot of results they have usually had several weeks at least before you noticed the pain/the doctor was prepared to give you steroids.

      Yes, doctors do often tell you what they think you want to hear. We have had many patients who were "promised" it would be gone in a couple of year and who are heartbroken when it isn't. We've asked doctors why they do it and asked them please to stop it, at least be a bit more vague about time scales. They reply they don't want to depress their patients with the idea of a long term, chronic illness. But we think the finding out later is worse. At least then people would understand better where we are coming from when we encourage a really slow reduction that is obviously going to take quite a long time - some doctors try 6 week tapers, some say 6 months. Neither works in PMR in the vast majority of patients. One patient has told me just this week he was given pred for 3 weeks and no more. The doctor says there is no more he can do. That is utter drivel. If what he has responds to pred then you give pred, at the lowest useful dose for as long as it takes. Otherwise you are condemning your patient to a life of pain and inactivity, at risk of developing depression. And the chronic inflammation predisposes them to vascular disease and cancer. 

  • MrsO-UK_Surrey
    MrsO-UK_Surrey barb101

    Posted

    Barb, yes I was on steroids for 5.5 years.  Right towards the latter stages when I was on just 1mg and considered it was in remission, I experienced what felt as though I was back at square one with a very sudden return of all the pain, which stopped me in my tracks and we had to abort our lovely riverside walk and get back to the car - I was in agony and felt so frustrated and disappointed.  However, it was very short-lived, and I was soon back on track, eventually reaching zero Pred.  Don't give up!
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