1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Stiffness/pain back

Posted , 11 users are following.

alan769008
alan769008

I was diagnosed with PMR in April 2016, since then I've gone from 20mg down to 8mg which I'm on now. The Doctor keeps wanting me lower, but since dropping below 10mg I get a lot more pain/stiffness. All he says is well you should be ok on lower dose now but I'm not. It's starting to get me down and I'm starting a new job next Monday. not sure what to do

Alan

1 like, 8 replies

8 Replies

  • Frit
    Frit alan769008

    Posted

    I have reduced from 15mg in May this year down to 7 at the moment . So far I have not had any flare ups but my GP has advised to up dose by 2mg if I do. I am also now staying on current dose for six weeks instead of a month. From my reading of this wonderful forum we are all so very different and the best advice I was given by an oncology consultant on getting the all clear from cancer was to listen to your body. So I would be tempted to press your GP to do some more research? Also , again from this forum, stress can be a factor in PMR - so changing jobs may be a factor? Hope this helps. Good luck with your new job.
  • EileenH
    EileenH alan769008

    Posted

    Find another doctor????? He's wrong - there is no "you should be OK on a lower dose" - you are you and your PMR is YOUR PMR. You are a man - so larger than the average lady I'd think and larger people do tend to need a bit more for the same result.

    This is what I wrote on your reply on another thread:

    "You probably should [go back to 10], yes. It took me over 4 years to get reliably below 10mg with prednisolone. 

    Doctors forget that the bioavialabilty (the amount the patient absorbs) of pred varies from 50% to 90% (it is mostly quoted as 70%). The 90% patient on 10mg is getting the benefit of 9mg, the 50% patient would need an 18mg dose to get the benefit of 9mg or, conversely, apparently on 10mg, they are only getting 5mg-worth, 

    After a hiccup on methylprednisolone where 20mg did not a lot except cause side effects, I was switched to a form of prednisone and was able to reduce to below 5mg. Then I had a flare which took me back to 15mg, now I am on 7mg and just holding, no stiffness but wrist pain. That is after 8+ years - PMR only lasts 2 years for 25% of patients. For half it is 4 to 6 years - and it usually takes them longer to get to a low dose. 

    I'm sure your doctor wants you as low as possible - but as low as possible is what works for you, not what he wants. The PMR is the boss - and it won't listen to him!"

    And you are WORKING - people who work almost always need a higher dose to be able to cope than those of us who are of sufficiently advanced years to be retired. How anyone can work with PMR is beyond me - I did for 5 years and without pred but I was freelance, worked from home and only had to sit in front of a computer after falling out of bed. I didn't even HAVE to get dressed and never commuted.

    By forcing you to go too low he may even be causing the need for more. If you could get to 9mg and stay you might be OK - but by trying to get to 8mg inflammation is building up again.

     

     

    • alan769008
      alan769008 EileenH

      Posted

      Thank you for the reply. One thing I can say about my doctor is he is the only one that said it may be PMR from my problems as the rest said it was either muscle strains or arthritis. I have a phone meeting with him on Tuesday so I'll mention it and see what he say

    • Silver49
      Silver49 alan769008

      Posted

      I admire anyone who manages to work and as Eileen has said it requires more pred especially with the stress of a new job. Best wishes in your new post.
  • EileenH
    EileenH alan769008

    Posted

    I forgot to say - a new study from a top PMR expert at the Mayo has found there is too much concern about patients being on long term PMR level pred doses:

    Google this:

    Polymyalgia Rheumatica and Steroid Side Effects: by Eric Matteson and Don Goldenburg

    Except for cataracts, side effects in PMR patients treated with glucocorticoids and non-PMR patients were not statistically different, new research finds.

    Far too many doctors are denying their patients a decent quality of life - and even the chance to work - because of exagerated fears about pred side effects. Maybe I might live a year or two longer - but it is at the expense of a decent QOL now.

    • judy93591
      judy93591 EileenH

      Posted

      A big AMEN to QOL, no sense being alive if ya can’t function at all!!!!!  Thank you EileenH for all you share. This forum got me over these almost 3 years!  
  • ptolemy
    ptolemy alan769008

    Posted

    Hi Alan, doctors do talk rubbish sometimes. Obviously below 10mg is too low at the moment to keep the inflammation under control. However over time you will be able to reduce when the PMR has been put in its place! 
  • jancorb
    jancorb alan769008

    Posted

    Your doctor sounds just like mine, our medical history sounds the same. Me too diagnosed in April 2016, I'm down to 7 mg, I've tried lower but have had three awful flares. I,ve stuck at 7 six weeks now, still stiffness and pain across my shoulders, particularly when washing up, using sewing machine the slight stoop required for these tasks brings on pain after 10 mins or do.

    My GP is referring me to a rheumatologist, he thinks there is something else happening as well as PMR , for me I'm happy with the advice I've gained from this forum. It's the preds that are dealing with the inflammation, so blood tests normal.

    Good luck with your new job, stick at a level of preds that keep you comfortable, maybe an extra couple of mgs for a day or two.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.