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Average PMR sufferer is 2 years?

Posted , 9 users are following.

bob73443
bob73443

Hi all,

I'm about to go to my GP in a few days, and I'm going to hear (once again) that my PMR should have burned itself out by now because all the literature says that the AVERAGE duration of this condition is 2 years.

I am definitely NOT over my PMR yet.

Here is my question:  does anyone know of anyone that has gotten out of this tunnel in 2 years?

I realize that people are on this forum because they are probably still suffering, and that's why I'm asking if you know of anyone (even if not on this forum) who has gotten through this is 2 years?

Thanks all,

0 likes, 18 replies

18 Replies

  • gillian_25383
    gillian_25383 bob73443

    Posted

    The first time I had it it lasted less than two years BUT it did come back in fact it has been on and off for almost 13 years now.Mind you it has partly morphed into inflammatory arthritis and due to having to stop steroids I am now on methotrexate injections which touch wood are keeping me mobile though I am on amitryptiline and tramadol at night's plus if I know I am going to be very active on a day I pre-emptively treat the inevitable pain so my husband does not keep trying to get me to go back home saying I have done enough when I am having a nice time.Ok my body pays me back the next day but as husband is usually at work then I get away with it.?

    • bob73443
      bob73443 gillian_25383

      Posted

      Gillian

      Thanks.  Interesting.  BTW, what exactly is the difference between PMR and inflammatory arthritis?  I thought they were more or less the same?

    • gillian_25383
      gillian_25383 bob73443

      Posted

      PMR is defined as "many painful muscles due to inflammationInflammatory arthritis affects joints primarily but can affect other tissues.Since muscles tend to connect to joints sometimes it feels as if they are splitting hairs and anyway both come under the rheumatology department in hospital.At present I am back under the hospital -thank goodness for NHS as I have been back and forth since I was 45

  • Anhaga
    Anhaga bob73443

    Posted

    I wonder how they determine the average?  And does that average take into account the fact that many people who wean off pred and are declared well by their doctors actually relapse, as gillian did?  Does it include time before diagnosis?  If it includes time before diagnosis I'm now well into my third year....

    My sensible doctor told me right at the beginning that many patients keep a supply of 1 mg tablets on hand in case they need a small dose, even after they are effectively weaned off pred.  Now I understand this must be to prevent a flare or fend off a relapse.  Sounds like she's prepared to accept this can be a longterm chronic condition.

  • Nefret
    Nefret bob73443

    Posted

    Your doctor needs a refresher course.  The medical papers now say between 3 - 5 years minimum.  I still have a PMR diagnosis after 15+ years, so I hope s/he doesn't come my way.

    I know of several patients in the 2 - 3 year mark and even more in the 5 - 6 year mark.  But those who achieve remission early have a far higher chance of it recurring later on.

     

    • bob73443
      bob73443 Nefret

      Posted

      Thank you Nefret, but almost all the information I've seen (including NIH here in  the states), which says:

      "Polymyalgia rheumatica usually goes away within 1 year, but it could last several years."

      Most recoginzed sites state that PMR typically lasts about 2 years.

      I realize that most of us here on the forum a longer-term sufferers and therefore our impressions of the condition might be skewed.  I'm only wondering if this is so.  Maybe the AVERAGE is about 2 years?

    • Tinaj
      Tinaj bob73443

      Posted

      Hey Bob, I was diagnosed this past March with PMR. My symptoms were resolved 95% with only 5mg prednisone. My CRP went from 16.8 to 3.5. Almost normal. After 1 month on the pred. I had shortness of breath, hyper/ fatigue , sleep disturbance, irritable, chest pain, and just felt out of sorts. I weened myself off after 2 1/2 months. I'm treating my PMR by taking supplements, and foods for inflammation and immune building. I still have pain and stiffness in my shoulders, groin, hips, and knees. But I'm able to be up and about. I do take a NSAID every 7 days, and Tylenol arthritis at times. I'm really counting on the PMR to burn itself out in a yr. or two as my MD said!!!!!!

    • Nefret
      Nefret bob73443

      Posted

      Sorry, didn't realise you were over there.  Most of the updated stuff is UK.  I really can't believe that Mayo and Johns Hopkins still have old information available?

    • lodgerUK_NE
      lodgerUK_NE Tinaj

      Posted

      Remember that GCA can come around with non-treated pmr - keep a very watchful eye out.
  • diana21296
    diana21296 bob73443

    Posted

    Yes, I know 4 men, 2 were off in exactly 2 years from 30mg, 1 was off in 22 months from 30 and 1 is down to 2mg in a year from 30mg! How lucky is that.  It seems that it is much easier for men to get off pred successfully in 2 years than women.   I envy people who start at just 15mg and their symptoms are controlled when lots of us have to start at 30 and still very slowly taper.  My female neighbour is off pred after 7 years but was able to lead a completely normal life while on it - going to the gym, walking miles and trecking when away on holiday. It did come back, hence the 7 years.
  • lodgerUK_NE
    lodgerUK_NE bob73443

    Posted

    Explain 'Bell Curves' on statistical information.

    So you take 100 people,  75 of those are at the top of the curve, the remaiing 25 fall down on either side of the curve.  Not neccessarily  all to the bottom of each side, but spread out.

    So the average is 75,(and so when somebody quotes you a figure as pukka, just bear that in mind - the top of that curve is never, ever 100). 

    The remainder who fell down on either side of the curves are the non - standard.  

    You could use your search engine for a more scientific explanation and tell him you are on of those who have fallen down one side of the curves  - s/he can choose which one. wink

    Yes, I do know people whose PMR has gone into remission within two years  - mostly men and that is a big difference and about 50% of those who have gone into remission, it comes back, sometimes just once back, but in three cases I know of  - it came back for a third time.

     

  • Tinaj
    Tinaj bob73443

    Posted

    Hey Bob, Thanks for asking about the 2 year magic number!!! I'm dying to hear!!! I'm counting on it to burn out in 1-2 yrs.!!!!

    Thanks again,

    Tinaj

    ??

    • bob73443
      bob73443 Tinaj

      Posted

      Hi Tinaj,

      I've been on prednisone for a little over 2 yrs (presently at 6 mg, going down to 5.5 mg), but I was not diagnosed for at least 6 months -- so I'm guessing I've had this for about 2.5 years.

      My "conclusions" based on the responses to my question is that there ARE people who have made it through this in 2 years or less -- most of them are not here on the forum.  Most of us who are here are still suffering from it, some for very long periods of time.

      Best to you on your journey.

    • bob73443
      bob73443 Tinaj

      Posted

      Hi Tinaj,

      I've been on prednisone for a little over 2 yrs (presently at 6 mg, going down to 5.5 mg), but I was not diagnosed for at least 6 months -- so I'm guessing I've had this for about 2.5 years.

      My "conclusions" based on the responses to my question is that there ARE people who have made it through this in 2 years or less -- most of them are not here on the forum.  Most of us who are here are still suffering from it, some for very long periods of time.

      Best to you on your journey.

    • Tinaj
      Tinaj bob73443

      Posted

      Thanks Bob! I wish you all the best!!!

      Tinaj 😌

    • Anhaga
      Anhaga Tinaj

      Posted

      Do everything you can to improve your general health so that as you wean off pred you aren't just going back to the same situation where PMR developed in the first place.  For example, I used to scoff at people who avoided wheat, for example, but having reduced my consumption of wheat  and other gluten-containing foods, I'm not so sure.  I eat a lot of salads in the summer and vegetable soups in the winter.  And lots of appropriate exercise.  Actively avoiding stress is one of the hardest things, but I'm getting better at it.  Currently beginning taper to 2.5 from 3, and have been on pred for 14 months.  

    • diana21296
      diana21296 Anhaga

      Posted

      I couldn't agree with you more. Diet, light exercise and trying to lead a stress free life is the name of the game here which folk who don't have PMR find hard to understand.   Doesn't seem to help my tapering though which I find difficult and slow, so have to be patient.  You are doing really well in 14 months...I am very jealous!!!  3 weeks before the shingles jab I was very healty and active without a twinge in the body and was thinking how fortunate I was.. then Wham....

       

    • Anhaga
      Anhaga diana21296

      Posted

      Do you think the shingles shot was the final straw, or was it a coincidence?  I have also been getting an alternative therapy, not readily available, although not unknown, in the UK or Continent, but available in Canada and parts of the US - low intensity light therapy.  You could google those words plus Toronto and the name Kahn to get information.  Having been teetering on the edge of a flare when at 3 mg, and going for an extra treatment or two instead of increasing my dose, now feeling better than ever, I am sure that the effect is not a placebo.  I get the treatment from a physiotherapist, so it's partially covered by my health insurance, not the government plan.   

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