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I've had PMR for 2 and a half years

Posted , 10 users are following.

Edulm
Edulm

I have an unusual case of PMR so my doc says. Rather than pain I have everyday periods of just feeling terrible in various parts (tummy, upper back, lower back, or entire upper body) of my body.  I want to emphasize it is terrible.  My doc had me on prednisone 2 years ago but did not want me to continue with it.  Now I just take a strong dose of Oxycodone on a as-needed basis.  I don't over do it.  Thinking back I think my deceased father had PMR even though it wasn't diagnoised and my niece has it so it apparently runs in the family.  I'm hoping it will just go away but it doesn't look so.  Any comments appreciated.

0 likes, 11 replies

11 Replies

  • tina-uk_cwall
    tina-uk_cwall Edulm

    Posted

    Hello Edulm, because of this 'different' pmr i don't know if all things will be the same, but with 'ordinary' pmr it is normal to still have the autoimmune condition that causes the pmr symtoms for 2 plus years. I have had pmr symptoms for almost 2.5 years and am on 5.5mgs of pred. even if I never suffer another flare I estimate that I will reach zero in another year, and if i suffer a flare, even longer. hopefully your type of pmr will just go away but it will do that when it's ready and not before. Regards, Tina
    • Edulm
      Edulm tina-uk_cwall

      Posted

      Hi Tina, as i've said I don't have pain with the PMR.  It just makes me feel terrible in the upper body.  I take oxycodone which helps.  Ed
  • EileenH
    EileenH Edulm

    Posted

    I have to say that making a diagnosis of PMR without fulfilling the criteria seems very strange. There is no diagnostic test for PMR and the diagnosis is clinical - based on the symptoms and possibly a bit of support from raised ESR/CRP as blood markers though that doesn't always apply. 

    Add to that the fact that painkillers of the normal variety don't usually provide relief in PMR - the pain is due to inflammation and only reducing the inflammation will work, oxycodone is not an NSAID. 

    As Tina says - I wouldn't hold my breath! I've had it for 12 years. Only pred makes life livable and having been on it for 6 years I can't see any major downsides to be honest. It isn't a case of pred is bad, no pred is good: as long as there is unmanaged inflammation rampant in the body it is causing damage, predisposing you to other nasties, in the form of cardiovascular disease and even cancers.

    • Edulm
      Edulm EileenH

      Posted

      Hi EileenH,  twelve years.  I have had it for 2.5 years.  I have no inflamation; it justs make me terrible in the upper body.  I take

      oxycodone which helps.  Ed

  • Daniel1143
    Daniel1143 Edulm

    Posted

    Intrigued that your Rheumatologist does not want you on prednisone which is the only truly universal antidote for PMR flaring and pain.  Beyond that, OxyContin is a very addictive and dangerous medication.  Never ever heard of it being prescribed for PMR 

    i would storngly recommend a second opinion 

    • Edulm
      Edulm Daniel1143

      Posted

      Hi Daniel1143, I've have the benefit of two opinions and both docs said I have an unusual type of PMR.  No pain, I just feel terrible in the upper body.  I take oxycodone sparingly not OxyContin.
  • ptolemy
    ptolemy Edulm

    Posted

    Did you have extreme fatigue, bilateral pain in shoulders and/or hips causing you to have trouble getting out of bed, dressing etc. did you have high blood markers? Did you find that on first taking the pred you were a new person due to the relief it gave? If this does not sound like you in general, you may never have had PMR. Although raised blood levels are not always apparent for everyone. Oxycodone is an opioid so I would not have thought it would be much good for PMR anyway, but if it works you may have something else rather than an unusual version of PMR. 
    • Edulm
      Edulm ptolemy

      Posted

      Hi ptolemy, the PMR started in Oct, 2013 awaking me with pain originating in my wrists and moving up my arms.  This happened twice then stopped.  Two weeks later I had two nights with pain originating in my upper arms and moving down my arms.  Since then I have had no pain just the terrible feeling in my upper body.  Blood tests reveal  no inflamation.  My internist and a rheumatologist agree it's an unusual type of PMR.  You may be right in that it isn't PMR but the question arises just what could it be. I take the oxycodone a half pill at a time as the need arises and it helps.
    • ptolemy
      ptolemy Edulm

      Posted

      At least the oxycodone helps which is good. Do you think it could be fybromyalgia if there is no inflammation?
    • EileenH
      EileenH Edulm

      Posted

      The blood tests ESR/CRO aren't elevated in 1 in 5 PMR patients - but what other sorts of tests have you had? There are a lot of things it could be, even PMR is just a name for the symptoms of some underlying disease - and as I say, it doesn't fit the criteria for the PMR we discuss here so you shouldn't accept "it's an unusual type of PMR" without some pretty extensive diagnostics being done. By a leading centre for rheumatology, not an office-based internist or even rheumatologist. 

      And if pred works I'd accept the risks of that long before I'd take opiates.

  • iellen32
    iellen32 Edulm

    Posted

    I want to help with my thoughts on that pain you have wifhout having any massive knowledge,

    I have GCA there are three years.

    As I see you are out of any steroid (!) following your doc advice.

    We need the steroid though. It is not our enemy it helps the inflammation which keeps running behind regardless the results of the blood tests and you symptoms are an evidence of that.

    I would look for a second opinion as soon as I could.

    Stay well, do the best you can!

    🍀🍀🍀

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