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To taper or not to taper... that is the question

Posted , 12 users are following.

nick67069
nick67069

I went for usual 3 month checkup with rheumi and all tests are fine, there is no measurable inflammation ( withing limits). I dont have much of the usual PMR symptoms except the morning stiffness, which goes away after the walk. IThe only problem I have is that my hands are weak and hurting to the point that it is hard to open bottle ( for example).  Rheumi thinks that it may be related to PMR and would like me to stay at the same level - 3mg. I have been at this level for couple of months. As you all know I exercise at pretty decent level and have no issue at all. So  two questions:

Is hands pain related to PMR ? It started when I dipped below 4mg back in the spring time. Or is it something totally unrelated. Blood test does not show any indication of rheumatism.

and second question is should I try to reduce pred or not? For me it is much easier to do taper during warm weather, this is why I am asking.

0 likes, 36 replies

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  • Anhaga
    Anhaga nick67069

    Posted

    This is only my gut feeling.  If the hand issue has been developing recently, not part of your initial PMR suite of symptoms, I'd guess it may have something to do with the pred itself weakening muscles.  Given that you feel well otherwise, why not try a very cautious DSNS .5 mg taper and see what happens?  And, is there something you do which could be stressing your hands?  It could be the most obscure thing which would never bother a person without PMR/pred.  

    • nick67069
      nick67069 Anhaga

      Posted

      that was exactly my first reaction.. I got a new bike and thought that maybe the different type of the handle is what might be causing the pain  in my hands...then I went for 3 week trip to EU and with no biking it hurt even more. It still could be that some activities makes it worse because of overall muscle weakness...
  • EileenH
    EileenH nick67069

    Posted

    My hand pain has always been related to PMR. But it is difficult to know really - it could be something else. If you mean the rheumatoid factor is negative/low that doesn't necessarily mean it isn't RA - there is a form described as seronegative RA but there are fairly strict criteria to fulfil to say it is RA without blood markers. It doesn't sound as if you would qualify!

    As for reducing - you are the only person who can know. Try it and see! But it is a very low dose - no worries if you stay there.

    • nick67069
      nick67069 EileenH

      Posted

      Now you got me thinking... If what I have is PMR related, what if I try higher dose like 5mg for several days and see if it goes away? If it is RA related, then it should not react to pred, should it?

      Your thoughts?

    • Anhaga
      Anhaga nick67069

      Posted

      I'm pretty sure pred is often used in the management of RA, although they like to phase it out in favour of other meds like mtx.  

    • Anhaga
      Anhaga

      Posted

      I've just remembered my cousin with RA loves when she takes pred (not very often and I'm not sure why she needed it not long ago) because it makes her feel so well!

    • ptolemy
      ptolemy Anhaga

      Posted

      Yes steroids are often taken in conjunction with DMARDs such as Methotrexate.  DMARDs can take weeks to begin working, so it’s important to try and get the disease under control as much as possible. Using steroids during this waiting period is a very effective way of reducing inflammation and helping alleviate pain and stiffness.
    • Anhaga
      Anhaga ptolemy

      Posted

      Okay, that must have been it then.  I remember years ago overhearing part of a conversation she had with someone else who had some sort of inflammatory arthritis, and the gist of it must have been how imperative it was she get off pred as soon as possible.  This is long before I had PMR so the conversation was rather meaningless to me at the time.  As RA is lifelong and responds to other meds I guess pred isn't desirable for long term use.  However this same cousin had to discontinue mtx a while ago because of liver markers, which are now back to normal  There's always something!  

    • nick67069
      nick67069 Anhaga

      Posted

      thank you both. I guess increasing pred would not prove anything.  I think I will try to wait it out @3mg level and decide about a taper in couple of months.
    • Anhaga
      Anhaga nick67069

      Posted

      Meantime, be kind to those hands.  I have osteoarthritis and my hands are very stiff and painful these days.  It used to be playing the piano for a little while, or doing the yoga exercise called the flower would help.  I find massaging the knuckles with a rotating motion is good, must release synovial fluid or something.  But it sounds like there is something else going on with your hands.
    • EileenH
      EileenH nick67069

      Posted

      Sorry for the delay in replying - I'm travelling!

      Pred is used to get flares of RA under control until the DMARD kicks back in. So it isn't proof positive...

    • EileenH
      EileenH Anhaga

      Posted

      If you have an inflammatory arthritis that isn't causing joint damage then low dose pred can be and is used to manage it long term - much as we do with PMR. The DMARDs are used to reduce the risk of potential joint damage. I found a paper about it a few months ago - can't remember the reference though,

  • Bethune
    Bethune nick67069

    Posted

    My Rheumatologist used first an X-ray and then an MRI in the sometimes sore but always enlarged joint .  The MRI confirmed my joint had effusion so I was diagnosed with RA.  Originally I had elevated blood results, but mostly I am sero-negative for PMR and RA. 

    My RA is 99% symptom free, but I have great  trouble lowering my prednisone below 15, and especially less than 10, without  experiencing PMR symptoms. 

    Perhaps they could MRI your hand joints to help with an accurate Diagnosis.

    • nick67069
      nick67069 Bethune

      Posted

      Hi Bethune, at the moment it is relatively manageable, so I am going to wait and perhaps if it persists, or get worse, I will ask for further examination.
  • jillian92038
    jillian92038 nick67069

    Posted

    Hi Nick I don’t feel able to advice re dosage as I have just messed mine up but interested to hear about your hands. My symptoms were all hips and legs based apart from at the height of my initial flare when I experienced shoulders and arms too.  It was only when I got to 2 mg that it hit the hands and then I experienced the recent flare. 

    Hands below 3? Interesting. 

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