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Just been told I have Polymyalgia Rheumatica.

Posted , 17 users are following.

judy50581
judy50581

What suggetions do you have for Polymyalgia rheumatica. Should I be exercising?

1 like, 35 replies

35 Replies

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  • ingo
    ingo judy50581

    Posted

    Hi Judy,

    I just started my journey with PMR.  20mg of pred has kept pain under control.  I am trying to run and bike at least a few times a week.  It has always been part of my life and I think because I've always been in good shape I can get away with it. Makes me feel like I have some control.  I'll be seeing a Rheumatologist for the first time at end of month.  Curious to see what his thaughts are.  Good luck.

  • carol20979
    carol20979 judy50581

    Posted

    Hi Judy, I was just diagnosed with PMR I also am on 10 mg pred but I started of on the six day pred 20>10>10>5,5 and 5.I think this just reduced the inflamation a great deal and the 10 has kept it in check so far. It's just await and see sort of thing everyone reacts differently. This is a great site everyone is very supportive.
  • MaggiGrace
    MaggiGrace judy50581

    Posted

    The other thing I forgot to mention - I am getting a massage once a week.   I know this is expensive but it really does seem to help tremendously.  I have the therapist focus on my back/shoulders/neck where my pain so the worst.  
  • EileenH
    EileenH judy50581

    Posted

    PMR causes the muscles to be acutely intolerant of exercise - they won't tell you that you have done too much and take much longer to recover afterwards. The other day I likened it to us looking at an olympic cyclist aiming to win - for us now just doing the cleaning is that sort of effort for our muscles. Movement is good yes but overdo it and you'll suffer the next day. Men, by the way, seem to experience PMR differently and many of them are able to continue exercising, albeit at a lower intensity, and also they tend to recover from PMR faster.

    5mg is a very low dose and it will be grat if it lasts  - but when I was first diagnosed I was given 15mg for 2 weeks, 10mg for 2 weeks and then 5mg for 2 weeks - brilliant at 15, good at 10 and I could have managed well at 5mg. Then. The 15mg seemed to clear out the existing inflammation - but who knows how long I could have managed at 5mg before it built up again. The rheumy stopped them after the 6 weeks and within 48 hours I was worse than before. It has taken 5 years to get to 5mg again - although in that time I have had a major flare.

    I also found massage useful but others found it made them worse - I suspect because it released cytokines in trigger points inmuscles into the system - cytokines are the inflammatory substances that cause the pain and stiffness in the morning and are released about 4.30am. If you are having regular massage I think it is likely that these trigger spots are less likely to form as they are bieng "emptied" regularly.

    Is 5mg giving you the same sort of effect as the 10mg did? You are looking for the lowest dose that manages to achieve the best result you have seen - otherwise there isn't a lot of point taking it at all. 

    • judy50581
      judy50581 EileenH

      Posted

      Thanks EileenH, No I felt better on the 10 mg. I just started seeing the rheumatologist last week. She will probably tell me more on next visit.
    • EileenH
      EileenH judy50581

      Posted

      Were you told to drop from 10 to 5 just like that? If so no wonder you feel rough. This isn't an illness where you can drop pred dose like a normal taper. You start at a dose that clears out the inflammation (like spring cleaning) and then reduce in very small steps and not too fast to find the lowest dose that manages the symptoms which you then will need to stay for some time (day to day dusting). It has no effect on the underlying autoimmune disorder that causes the symptoms we call PMR, that is separate and there is nothing that will cure that - but in time it should go into remission and then the symptoms will go away. This is a months and years job not a days and weeks one.

      By reducing in small steps (not more than 1mg) and not too fast (maybe once a month) you can identify the right dose more accurately. Big drops will bring symptoms back and you'll have to go back up - and end up taking more pred than you need have done.

      And don't let the rheumy bully you into reducing fast - they have rarely had PMR themselves and appear not to know much about managing it other than it responds to pred.

    • erika59785
      erika59785 EileenH

      Posted

      Eileen, I learned my lesson about reducing too fast.  I will  follow strictly reducing 1 mg a month while on 20 mg.  I have a new GP who agrees with me.   I am starting to feel better.  THANKS as always for your caring guidance. Erika
  • Oregonjohn-UK
    Oregonjohn-UK judy50581

    Posted

    Judy - I'm guessing you are based in the US?  There seems to be a culture of getting off of preds as quick as possible - this may not be a good thing.  It's worth remembering the preds cover the symptoms they do not 'cure' the PMR.  If the dosage starts too low and then reduces quickly you will be back to where you started in no time, or possible worse.  The under lining 'problem' is with the autoimmune system and this can take , at minimum, one year!  In most cases 2 years and some a lot longer.  Best of luck and welcome to the 'club'

    Exercise - take it easy and don't think just because you feel better you can go back at the same level - you won't!

    • erika59785
      erika59785 Oregonjohn-UK

      Posted

      John, you are so right!  I had to learn my lesson, and this previous flare was the WORST!  All because, I reduced too fast.

      It is back to rain here in Oregon......Greetings, Erika

    • Oregonjohn-UK
      Oregonjohn-UK erika59785

      Posted

      Not only me Erika!  Sorry about the rain in Oregon got to keep it green in the Willamette Valley!   Brilliant sunshine here in the sunny south of the UK - I have even got a bit of a tan - mind you I have spent a lot of time swinging and dozing in my garden hammock.  Also helps revieve the stress.
    • EileenH
      EileenH erika59785

      Posted

      Send it south - I'm sure California would accept it gratefully...
  • snapperblue
    snapperblue judy50581

    Posted

    Like the others, my main suggestion is reading this forum (including older posts) and raising any questions you have.  

    One of the challenges is determining the right prednisone dose.  As Eileen says, the goal is not getting off it as soon as possible (which many doctors seem to think) but taking as little as you can that CONTROLS THE SYMPTOMS.  If you have pain, you have chronic inflammation and that may be as bad for you as the side effects of prednisone.  The underlying disorder will last as long as it lasts.  The point of prednisone is controlling the inflammation and pain- some doctors act like going off prednisone should get rid of the PMR!   

    Another tip is that we are all different- the dose of prednisone, the pace of reduction, the amount of exercise- there is no cookbook, so you'll have to work out what is best for you.  You probably want to cancel any marathons you have signed up for, but you don't want to be totally inactive either.  Most here recommend walking.

    A major theme here is SLOW reduction of prednisone dose.  Reducing so fast that symptoms recur just makes things worse, requiring you to go back to a higher dose and stay there longer than if you'd reduced slowly.  I am having real trouble with this myself, since I continue to need a relatively high dose (20 mg) and my attempts to get below this (despite traveling) have probably exacerbated the situation.  

    Be sure you know the warning signs of "giant cell arteritis" (GCA), also called "temporal arteritis."  This is a potentially very dangerous condition that can cause sudden, irreversible blindness.  Relatively few people with PMR develop this (and only a small percentage of those actually lose their sight), but you should know the warning signs and what to do if they occur.

    Finally, I hope you have a doctor who will listen to you.  Some do, others pull out the cookbook and blame you if you do not respond as they expect. The folks here can provide you with lots of great information, from their experience but also articles written for doctors that can help you out.

    I hope things will go smoothly for you!    

  • eleanor74688
    eleanor74688 judy50581

    Posted

    Hi iv just been told iv got pmr started of at 20 pred then went down to 10 Then dropped 1 every 4 weeks got down to 7.And bang felt like i had been hit by a bus.So my Gp Put me up to 9.I feel a bit better than i did .These steriods are making me so hungry am putting weight on like nothing on earth.Has any1 got any reccomendations some sort of diet that will help.Im only 49 and thought i was to young to have this.Its bringing me down so low i feel misrable.Some days are a real struggle i feel about 80. .
    • EileenH
      EileenH eleanor74688

      Posted

      To help with pred-associated weight gain many of us have had a lot of success by cutting carbs drastically. Pred changes the way your body processes carbs - and that leads to the depositis of fat in the usual places: face, around your midriff and on the back of your neck. 

      If you still feel that bad - you either need a bit more pred for now or you need to learn about pacing. It doesn't mean you won't get to a lower dose - just not yet. And you need to reduce in smaller steps, especially under 10mg. You have been on pred long enough for your adrenal glands to have to wake up again when you got to 7mg. That may have been part of you feeling so bad there. 

      Plus, I do hope your GP is aware that you are not just reducing to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. 

      There's a load of reading here:

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

      - and a slow reduction scheme that works extremely well to avoid flares until you get to that lowest dose is in the replies, just scroll down.

    • eleanor74688
      eleanor74688 EileenH

      Posted

      Thanks Eileen.im on 9 just now and feel ok with that.Soon as i go any lower thats when it hits me..i have to take these for 2 weeks then drop to 8 one day then back up to 9 the next day then 8the next day then 9 and so on for 2 weeks.I will cut out all carbs stick to fish etc But by god its hard.i had never heard of this illness in my life its a sore 1 and not easy to cope with.Some days i can hardley get out my bed for the tiredness.
    • EileenH
      EileenH eleanor74688

      Posted

      Do look at the slow reduction scheme in the replies to that link. It is being used in a clinical study in the north of England and has been used by a lot of patients on the forums with a great deal of success.
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