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differant meaning

Posted , 9 users are following.

pauline36422
pauline36422

hi girls its me again. could anyone tell me if polymyalgia,and polymyalgia rumatica,

are different types of the same thing one being less than the other. only because, after reading all the posts on the forum, I am beginning to think that the pain I had when I was first diagnosed

with polymyalgia was the worst thing I had experiencd. I don't get all the other symptoms. like being tired. pain in the morning. not sleepingand all the rest. from 20 mg now down to 6 mg

and only the little bit of buttock pain remaining. did I have the full blown thing. and more to the point, would the chance of a relaps be less,wishfull thinking or what lol

1 like, 12 replies

12 Replies

  • marilyn46889
    marilyn46889 pauline36422

    Posted

    Hi Pauline,I'm no expert but I think polymyalgia and polymyalgia Rhuematica are the same thing!!
  • ptolemy
    ptolemy pauline36422

    Posted

    Polymyalgia Rheumatica is Polymyalgia or PMR, it is just faster to say! You are lucky not having steroid side effects such as not sleeping, although in my case it did not last too long. My buttock pain has gone thank goodness, but I still have shoulder pain. Before diagnosis the pain to just scratch my nose was excruciating I just had so much pain lifting my arms. I could only just shuffle around the place as my thighs were so painful. Thank goodness for steroids.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey pauline36422

    Posted

    Yes, the others are right, they're absolutely one and the same.  And yes, depending on the severity, the pain can be "the worst thing ever experienced".  That you didn't suffer from the typical tiredness that so many of us complain about, or the morning stiffness or lack of sleep is a bonus.  Some people do have textbook recoveries once on steroids with few of the oft reported side effects and for this reason many of those people are probably unlikely to feel the need to join forums such as this.

    The chance of a relapse can be less if you taper very slowly and in smaller amounts from the dose you are on now, so that you don't miss the point where the inflammation might still be lurking and burst into life again.  It's great that you have done so well, just don't rush it now, and good luck!

  • liam15153
    liam15153 pauline36422

    Posted

    Hi Pauline 

    Im recently diagnosed with PMR so I can't help you with your query but I'm very interested in how you tapered down from 20mgs to 6mgs. 

    I was initially prescribed 15mgs but it didn't work and I have been on 20mgs for 4 weeks. I'm also on AA 70mgs once a week as a Dexa scan revealed osteoprosis. I take 2 Calcicnhew +D3 daily and I'm on 1 Omeprazole 40mgs. All this change is hard to cope with as I was pain a drug free up to the onset of PMR.

    My rheumy has just now prescribed the following reduction programme

    17.5mgs for 2 weeks

    15 mgs for 2 weeks

    12.5mgs for 2 weeks

    10mgs maintenance, not clear for how long.

    im very nervous about proceeding at this pace as one day last week I took only 15mgs by mistake and the pain in both arms was pretty bad. Any views from fellow travellers (Eileen, Mrs O) would be greatly appreciated.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey liam15153

      Posted

      Hello Liam

      Although your rheumy's recommended tapering schedule looks sensible, I have reservatons about going from 15 to 12.5 after just 2 weeks for the simple reason that you say the original 15mg dose didn't work.  If it were me I would consider remaining at the 15mg dose for at least another couple of weeks then if symptoms remain under control just try a 1mg reduction to 16 for a couple of weeks.  We have come across sufferers who have struggled trying to reduce from the starting dose who have been successful once trying this slower pace.  If you are someone who had raised blood test markers at the outset, you should be having repeat blood tests, preferably before each reduction.  They can prove a useful guide along with your symptoms.

      I do hope you are feeling better on the increased dose.   

    • EileenH
      EileenH liam15153

      Posted

      Theoretically - fine. Practically may be another thing if you had a return of pain when forgetting the right dose once. You need at least 6 weeks at the starting dose (20mg for you now) to get the inflammation under control before thinking about a reduction. Then, as MrsO says, a slower reduction, 1mg at a time is safer. It isn't faster to go in 2.5mg chunks if it fails and you have to go back.
    • liam15153
      liam15153 EileenH

      Posted

      Thanks Eileen and MrsO, I will proceed on the more cautious basis, I feel much happier with that, as slower may be faster in the end - the hare and the tortoise act.  I know that the imflamatoin is still very much there; after my one mix up with the pred, it came back to bite me immediately. However, it was the very day after my visit to my rheumy and I had felt fine when I was with him. I will also follow up, as suggested, with regular blood test as my CPR marker was at 56 four weeks ago. At the moment this PMR is all consuming but at least the weather is beautiful here in Ireland and it seems like the dawn chorus has been at full song all day long.
    • EileenH
      EileenH liam15153

      Posted

      You do tend to feel fine on the right dose! Some people don't - some people never feel 100% and we are working on getting the doctors to understand that! So often they get all confused when someone still has pain or stiffness on pred - but they still try to rush people off pred or at least to a much lower dose!
  • old_nanna
    old_nanna pauline36422

    Posted

    I think you might be right , I had same symptoms as you too but also I'm getting my energy back and keeping down to 1/2 mg ores. the pain I had was not nearly as bad as Ross river fever I had years ago , I'm determined to get off this med. and get free of the side affects , I also am not content with the doc. I see but insist on printout of all blood tests so I can keep check myself , good luck getting down off the med. but do it slow and long , ok you can always increase the dose but come backn slowly , a dic told me that ,he also was on prednisone too good luck .
  • EileenH
    EileenH pauline36422

    Posted

    Not really different - just us being lazy probably! You can have all the symptoms or just some of the symptoms and there doesn't appear to be any correlation with how bad it will be later - it probably has more to do with how long it is before diagnosis and treatment.

    You can have the symptoms that aren't "just" PMR - they can be caused by other things and then they often don't respond to a moderate dose of pred. Sometimes a higher dose of pred will make some difference but if pred isn't the best treatment then the symptoms may come back as soon as you try to reduce. But if it responded to 15mg or so of pred and quite quickly then it probably was PMR and some people are bad at first but are able to reduce steadily as you have done. Others aren't as bad - but have a hell of a time getting off pred. I suspect some of that is the body's reaction to pred rather than the PMR but who knows!

  • christine26681
    christine26681 pauline36422

    Posted

    Hello pauline36422. It is my understanding that polymyalgia rheumatica is a distinct disease, usually with raised inflammatory markers (ESR and CRP), whereas polymyalgia (muscle pain or pain in many muscles) alone can occur in some other diseases such as lupus or scleroderma. These conditions sometimes mimic PMR and would be ruled out at initial blood testing.

    What you have seems to be typical PMR as it responds well to steroids and the dreadful pain you describe is typical too!

     

    • Nefret
      Nefret christine26681

      Posted

      Polymyalgia Rheumatica/Polymyalgia/PMR are all the same condition.  PMR is easier to say and write so we tend to use that name.

      I was first diagnosed with PMR in 2001 and I have never had raised inflammation markers, just a very good Rheumy who knew what was what.

      All autoimmune conditions share some symptoms which is why PMR is regarded as a diagnosis of exclusion - if everything else is tested, discussed and discounted then PMR it is.

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