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New to PMR, Is this the "normal" or is it a flare up

Posted , 12 users are following.

gilman
gilman

As a new patient recently diagnosed with PMR, I am on day five of Prednisone.  I take 15 mg and within about 3-4 hours my pain and stiffness is reduced by 90% or more.  It is truly miraculous.  

However, by around 4:30 am I awake with pain in my shoulders and hands almost worse than before I began the medication.  I take my dose and in about 3-4 hours I am great again.

Is this a sign that my dose is too low, i.e. I am having a flare up, or is this the pattern that others experience?  

Today I thought I might split my dose (10 morning and 5 later in the evening) but the pain was so bad I went ahead and took the 5mg about an hour later.  Perhaps I should have waited a few more hours but I needed relief.

I understand each of us is different but I value the input of others who understand first hand what I am going through.

thanks

0 likes, 27 replies

27 Replies

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  • ann3035
    ann3035 gilman

    Posted

    Sorry to hear you have been diagnosed with PMR , I am just newly diagnosed as well , on pred for 7 weeks now . It took two weeks before my pains started to gradualy  disappear , I started on 15mg . I have been pain free for 3 weeks now so im thinking you may need to be on a higher dose.I will be reduceing to 12.5mg in a week so fingers crossed.Hope you get pain free soon
  • mike42494
    mike42494 gilman

    Posted

    I take 10mg in the morning and 5mg in the early evening. It takes 3-4 hours for the pills to really work.

    it has been a miracle drug for my chronic pain. I have weaned off 4 other pain meds that I have been taking for 12 years.

    The side effects of my other meds caused Stage 4 Kidney Disease so I will put up with the few side effects from Pred. To be pain free.

  • LayneTX
    LayneTX gilman

    Posted

    You'll get more info soon on here, but in mean time I'll tell you what I did. 

    15 mg for a week, like you, but maybe only 5% better, so Doctor up'd it to 20 mg for week. This helped to be better, though I feel Doctor was expecting no pain from Pred, but I learned for some even a 30% decrease in pain is good. I stayed at 30% pain for quite a while. Sometimes from what Eileen has said I wonder if I should have stayed higher for longer. 

    The CGA folks on here, bless their hearts, start at like 60 mg.

    from what I've learned in reading here, I personally wouldn't split dose this soon.  My pains always got better about 4-6 hours after Pred kicked in. Eileen said it would be optimum to take Pred at 2:00 a.m. But not many of us want to get up then on purpose! Ha.

    good luck my friend.

  • angelcake61
    angelcake61 gilman

    Posted

    I started on 15mg and was pain free within a day, after a few weeks I dropped straight down to 10 and some pain came back, I went back up to 15 and reduced slowly. That's was over 2 years ago I'm now on 3mg and been there for over 6months. Happy to be at that level over the winter months. I still get some pain so I won't be reducing anymore u till I've been completely pain free for a month.

    Hope you get sorted soon

  • EileenH
    EileenH gilman

    Posted

    Did you - because you felt so much better - go and do all the things you hadn't been able to do? The pred only manages the inflammation which relieves the pain and stiffness. The underlying autoimmune disorder that causes the symptoms we call PMR remains active - the pred has little or no effect on it. Your muscles remain intolerant of acute exercise and if you do too much will ache and be sore as if you had run a marathon without training or lifted heavy weights. That side of PMR is your responsibility - you have to pace yourself, know your limits and not exceed them and rest appropriately. Otherwise you will get the pain returning.

    The antiinflammatory effect of pred lasts between 12 and 36 hours, depending on the person. Every morning a new batch of the inflammatory substances that are the root cause of the pain and stiffness is shed in the body at about 4.30am. If the new lot is too much for the remaining effect to combat - back comes the pain and stiffness. Almost everyone wakes in pain and stiff. Many of us take our pred very early and settle down for another couple of hours by which time the pred is taking effect. 

    A study found that for the plain white uncoated variety of pred, the optimum time to take it to avoid the morning stiffness is 2am - it has reached its maximum level in the blood by soon after 4am, the inflammation has no chance to take hold. I know several people who do that very successfully and I am on a special form of prednisone that you take before bed, it releases during the night about 2am and the result is NO MORNING STIFFNESS! Unfortunately it isn't available on the NHS in the UK and is very expensive (even more so in the USA).

    But look at what you are trying to do - it is probbaly too much and you need to cut back a bit.

    • gilman
      gilman EileenH

      Posted

      Thanks for the advice.  I just posted another comment, but it was really meant as a response to your information.  You are all so open and helpful.
    • kathy67492
      kathy67492 EileenH

      Posted

      Eileen, after reading your detailed response, my question is: if I cut back on all activity...really slowed down...would I be able to taper the prednisone better? I am 2+ years down the road @7-1/2m...feel "stable" but I can't do a lot of things. Thank you!
    • gilman
      gilman EileenH

      Posted

      Just to be perfectly clear, am I correct to assume that even folks on an appropriate dose, either initial or maintenance, wake with pain and stiffness until their next dose of Prednisone?

       

    • EileenH
      EileenH kathy67492

      Posted

      Not necessarily at all - it relieves the symptoms of the underlying autoimmune disease which remains active - all slowing down so much would do is stop you doing a lot of things and the trick is to find the happy medium until the autoimmune bit burns out. Even at a higher dose there will still be things you can't do - the idea is to find the lowest dose that allows the same quality of life as that starting dose. There is no real virtue in cutting the dose just for the sake of it or putting up with pain when 1mg more prevents it.

      There is one lady who decided to become a "Precious Princess" and didn't do a lot of things - it did lead to being able to reduce the dose without as many problems and it definitely allowed several "add-ons" (bursitis and stuff) to heal properly so she eventually got to what seems to so many to be their Holy Grail - zero pred. About 5 or 6 months later the stiffness and discomfort started again - rheumy confirmed what she knew in her heart: PMR was back. This time she says she's totally happy on her 7.5mg and although she does attempt reductions she doesn't feel the same desperation to get off pred. Quality of life is the A and O.

      You might give up doing EVERYTHING - but that isn't good either, some gentle exercise is really very very useful and needed in PMR for all sorts of reasons - but would that make life any more worth living just to take a couple of mg less pred? 

      What would probably be better is to draw up a very gentle exercise programme - a study on PMR in the north of England is doing that by giving patients pedometers and encouraging them to increase their walking steadily. That alone is a good start - it doesn't have to be the gym if you can't manage it. Studies in Austrai have shown that keeping walking makes a major difference to people as they age and to diabetes, raised cholesterol and other things. It's all to do with mitochondria - the power houses of your cells.

    • EileenH
      EileenH gilman

      Posted

      In a word - yes.

      Some people always have some morning stiffnes until the pred kicks in. I don't - the pred is there at 4am and does the job long before I wake usually. Sometimes I wake then but I'm not stiff or in pain. But that is a particular, not widely available form of pred.

    • Elijo
      Elijo gilman

      Posted

      Hi Gilman,  Since I started with prednisone late October, and with reductions, I have NEVER had any recurrance of the pain or stiffness I started with (which was very severe).  I started with 40, am now down to 10 and doing very well.  I don't know if others have had this good experience or not and would love to know.
  • whitefishbay
    whitefishbay gilman

    Posted

    I was given a prescription for 15 mg to start (i had been suffering since Nov).  It helped but my sister in law (had PMR for 5 years) says they usually start you off on 20 mg. so I upped it to that (started 29 March).  I feel a bit stiff first thing but within an hour the pred works.  I can deal with any tiny bit of stiffness, etc.  Want to stablize until I start reducing.  I must say walking helps. 

    Good luck.

    • EileenH
      EileenH whitefishbay

      Posted

      15mg is the usual recommended starting dose these days but larger people or ones with very severe inflammation may need a bit more. The most recent guidelines are suggesting up to 20-25mg - but never above 30mg. A study a few years ago showed that 75% of patients responded well within a month - and the smaller females responded better than the bigger males. So size matters...
  • gilman
    gilman

    Posted

    I have been more active I am certain, but still remain virtually pain free all day.  It isn't until the wee morning hours that the pain and stiffness occur.  

    I guess that is normal.  I might try the 2:00 am dosage suggestion. If it were not for the darn morning pain I would think I were cured.  It was just so severe this morning I couldn't try a split dose on the chance that it would be insufficient to provide me any relief.  I might try to do it another day though.

    As an aside I went to Physical Therapy, which I had been referred to when the doctors thought I had tendinitis in my right shoulder.  They were amazed how improved I was, able to do excercises and movements I couldn't have dreamt of only a few days ago, prior to the Prednisone.

    Thanks to you all.  I wish more folks in the medical community were as responsive as members of this forum.  I certainly do not feel alone.

    • EileenH
      EileenH gilman

      Posted

      "As an aside I went to Physical Therapy"

      Careful - PT must be adapted to PMR or it just makes things more uncomfortable rather than better. Is that perhaps why you were so bad this morning???????

      No - never think "cured", this is "long term management". 

    • gilman
      gilman EileenH

      Posted

      PT didn't seem to exacerbate things.  It loosened me up, but all my sessions but the last were proportion to my PMR diagnosis and first dose of Prednisone. The last visit which was on Prednisone was so easy for me. 
    • LayneTX
      LayneTX gilman

      Posted

      That's great gilman, my PT kept asking me why I was on Prednisone! 

      Though he said he knew what PMR was. Ha. He worked me out like an athlete. Now I fear PTs. 

      I reitterate this just so others know. Some PTs don't really understand. 

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