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

Pain returning

Posted , 6 users are following.

rrobinson75
rrobinson75

i have had pmr for about a year and started prednisone at 15mg.  I had reduced to 6 mg while taking Metholtrxate weekly.  My rheumologist wanted me to reduce to 5 mg.  since I have done that my shoulders, upper outer back, and collar bone area are really hurting and almost feel like burning.  I have tenderness along my sternum.  Prior to this, I was doing pretty well with pain from pmr under control.  Not really sure what to do?  Any suggestions greatly appreciated.

0 likes, 8 replies

8 Replies

  • daisylazy
    daisylazy rrobinson75

    Posted

    All i can say is that i too have reduced to 4mg from 20mg and can start to feel a burning sensation across the back of my neck and middle back . No great pain or stiffness so i was going to continue but im sure someone with more knowledge will be along later .good luck .
    • rrobinson75
      rrobinson75 daisylazy

      Posted

      How long did it take you to go from 20 mg to 4? Just curious. Thank you for your comments.
    • daisylazy
      daisylazy rrobinson75

      Posted

      Was diagnosed in february 2015.Rheumy wanted to put me on plaquinal after a few months but i refused and when i got to 10mg i followed the forum's advice and tapered by dsns and so far so good except for the burning .

  • snapperblue
    snapperblue rrobinson75

    Posted

    Hi rrobinson:  Do you have a special problem with taking prednisone?   If not, why does your rheumatologist want you to reduce to a specific level?

    The prednisone is to control the symptoms of PMR.  It does not cure it.  You need it as long as the PMR is still active, which for most people is at least 2 years.  

    If the symptoms have returned, it seems probable that you need to stay at a higher dose. Read the "back issues" of this forum to see other patients' experience.  I hope your doctor is open to discussion.  

    • rrobinson75
      rrobinson75 snapperblue

      Posted

      My rheumologist is concerned about bone loss. I have osteopenia. Thank you for your comments.
    • snapperblue
      snapperblue rrobinson75

      Posted

      I have osteoporosis.  Since starting the prednisone, I have had an annual infusion of Reclast to protect my bones from calcium loss.  

      There are potential problems with that- and with prednisone and with chronic inflammation (which is the cause of PMR). I am mostly concerned about the vascular inflammation which is increasingly tied to rather bad stuff. This gets to be a complicated cost:benefit analysis with no obvious answer! 

      "Ya pays your money and ya takes your choice!"  

    • Anhaga
      Anhaga rrobinson75

      Posted

      I hope  your doctors are not telling you to take bisphosphonates as they are no longer recommended for people with low bone mass (aka osteopenia).  There has been a study showing that a combination of micronutrients can help to reverse bone loss.  You can google it using those words plus bone density.  So diet, supplements and exercise (like walking) are the way to go!
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.