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PMR how long does it last?

Posted , 11 users are following.

gee013
gee013

i read somewhere that most PMR resolves after a couple of years. My Dad's has been going 5 years without any real reduction in steroids. Can anyone tell me how long it lasts please?

0 likes, 12 replies

12 Replies

  • Mrs.Mac-Canada
    Mrs.Mac-Canada gee013

    Posted

    Hi Gary,

    Once blessed with this lovely disorder it stays with us forever.  Our hope is that it goes into remission and stays there.  

    The question on how long it lasts before going into remission has been discussed

     in other recent discussions and I believe the new research shows that 25% go into remission within 2 years, 50% within 5 years and 25% stay on prednisone (low dose) for longer, possibly forever. 

    What dose is your Dad on?  What are his on going symptoms? Has your Dad been tested for other possible causes to his problems? 

    I believe it is unusual to have to stay at higher (above 10mg) for any length of time.  Usually you start at 15mg (some start at 20mg, I did) and work your way down by reducing no more than 10% at a time and once you get to 10mg stay there for as long as a year before reducing further.  At lower doses many use the Dead Slow, Almost Stop method of reducing that can be found on the Patient UK NE site.  Sorry don't know how to add the link. 

    Others will be along shortly with more information for you I'm sure.  I do hope you get some answers that will help your Dad.  It's awful to see our loved ones suffering.

    Diana

    • gee013
      gee013 Mrs.Mac-Canada

      Posted

      I think he has had very bad follow up. after about a year and two GP's opinions and loads of tests (including for myeloma and myositis) he went as high as 60mg and then after seeing a rheumatologist who reduced his does and seemed to confirm the diagnosis) he was then followed up twice by a rheumy nurse specialist for about a year and then was lost to follow up when the rheumatoogist left the service. In 5 years he has never had a proper remission in that he has never been below 15mg. Now he is on 17mg. The other complication is that he has some degree of chronic asthma, now COPD (never ever smoked) and needs frequent antibiotics and a boost to his steroids every time the GP (or he) thinks he has an chest infection.  He has just seen a Geriatrician/elderly persons specialist and he seems to think the PMR does not settle due to the infections. and the anaemia (9.9) is due to the PMR. He has never been put on Iron tablets. 

      thanks for all your comments. Hoping it does not last 15 years.

      G

  • Oregonjohn-UK
    Oregonjohn-UK gee013

    Posted

    This is the link Diana mentioned https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    I started at 30 mg but reduced quite quickly to 15 mg, and then slowing using the method in the link, down now to 6 mg after just over a year.  Aged 74.  Best of luck for your Dad - John

    • Mrs.Mac-Canada
      Mrs.Mac-Canada Oregonjohn-UK

      Posted

      Hi John,

      Could you please tell me how to add the links.  I can't figure it out😋.

      Thanks much,

      Diana🌸

    • Oregonjohn-UK
      Oregonjohn-UK Mrs.Mac-Canada

      Posted

      Hi Diana - If you go to the page https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 and then highlight the address bar (blue all across the address) then right click over it, select copy from the drop down menu, then return to your original post then select right click again and paste from the menu -  or you can put the cursor in the post and hit Ctrl V.  You can also copy the link as above and paste it into  Word/Notepad etc. for future reference.

       

      I'm away on holiday (Cyprus) for just over a week so will not be around.

      Hope it works for you!!

      Regards, John

  • ptolemy
    ptolemy gee013

    Posted

    I came across a friend of a friend yesterday who had had PMR for fifteen years. She had been a very succesful headmistress and had to give it all up in her early fifties. A rotten thing to happen. 
  • Susanne_M_UK
    Susanne_M_UK gee013

    Posted

    My PMR started about 5 1/2 years ago. I slowly worked my way down on the Pred and as far as I can remember, by year 3 or so, may be even earlier, I was on a maintenance dose of 2mg and hardly aware of it.

    The fact I then got GCA in year 5 I don't think is related, I was just unfortunate.

  • Charlieschoc
    Charlieschoc gee013

    Posted

    My mother has had PMR for 8 yrs now.

    Last but one visit to rheumatologist he told her he now believed a lot of her pain was now from damage caused by the steroids as she had been on them too long.

    ( he explained that muscle wastage had occurred and she needed to build up the weak muscles with gentle exercise)

    He told her to carry on reducing the pred.

    Mom was really worried that he was wrong but did follow his advice.

    Next visit doc was chuffed that she had done so well coming down by another 6g. (Reducing 1 per month) she is now down to 3mg. The lowest since diagnosis.

    It seems the doc was right.

    Just wondering if this may apply to your dad?

    Hopefully he will get a break soon xx

    • gee013
      gee013 Charlieschoc

      Posted

      every time he drops below 17mg he can hardly move and his hands seize up (he describes spasms of his hands), stiffness and pain shoulders and back. Either that or he gets a episode of shortness of breath adn they put his steroids back up again. He too has become very weak. Legs in particular and his balance is shot to pieces.....
  • EileenH
    EileenH gee013

    Posted

    How long is a piece of string? The figures Mrs Mac gave are about right from my observations on 3 different forums although I know one group who don't believe it. I've had PMR for well over 10 years now,

    However - the first question that needs to be asked and investigated is whether it is really PMR or late or elderly onset RA which can manifest identically and, while it WILL respond to pred, it won't do so to a lower dose. A bit of an indicator there is the original response to pred - for PMR a 70% response to 15mg pred within a few days is typical. Other arthitides don't respond as well - taking longer or not as obvious an improvement. Other medications may achieve more - and many of the PMR patients who improve on methotrexate do so because at least part of their problem is/was RA as opposed to PMR alone.

  • TERI23
    TERI23 gee013

    Posted

    Had mine going on 6 years with no relief sio yet 5 years my necktie could use a three letter express but will be nice
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