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PMR New Rheumatologist Says Decrease Prednisone Eventhough Sed Rate is 40?

Posted , 10 users are following.

Misha452
Misha452

I have had PMR for 18 months and started Methotrexate (12.5 mg) 3 months ago because I was having trouble reducing Prednisone below 7 mg without my Sed Rate increasing. Sadly my first Rheumatologist went out on medical leave and the new one thinks I should decrease my Prednisone dose to 6 mg even though my Sed Rate is 40 because " Sed Rate doesn't always correlate with symptoms." My old Rheumatologist always said not to reduce Prednisone until the Sed Rate was in the normal range.  Has anyone tried reducing Prednisone when their Sed Rate was still elevated...and did it cause a flare?

1 like, 10 replies

10 Replies

  • ptolemy
    ptolemy Misha452

    Posted

    My SED rate has always been above normal, usually above 50, and I have reduced to 5mg. My doctors just say that I am prone to a high SED rate. 
  • EileenH
    EileenH Misha452

    Posted

    "Sed Rate doesn't always correlate with symptoms."

    Well he's quite correct there - so how are your symptoms?  If they are non-existent it is probably worth trying a reduction to see what happens. If symptoms return you go back to where you were - nothing lost.

    It might be interesting to investigate WHY your sed rate is raised. It may well be that you have a high sed rate for some other reason - or for no reason at all. Some people do. 

    • Misha452
      Misha452 EileenH

      Posted

      My Sed Rate has been correlated with my symptoms in the past.  It was 98 when I was diagnosed and after two months on 20 mg of Prednisone it had fallen to 34 and it stayed under 30 until I tried to taper below 7.5 mg of prednisone. I don't think my Sed Rate is high normally since it was 7 when I was 44, I am now 55 but that is the only Sed Rate I have pre-PMR.  I do have lots of headaches which come and go and fatigue is a big issue because I am still working.  I have severe calf pain when walking but my Rheumalotogist says that is atherosclerosis and nothing to do with PMR.  He has run many other tests because he thought I might have a different inflammatory arthritis because a couple of my knuckles were swollen but all of the tests came back negative.

    • EileenH
      EileenH Misha452

      Posted

      You have claudication pain? It comes when you walk and goes away when you stop? It may not be atherosclerosis - has he checked that out? 

      This link is to a paper that describes claudication that was due to GCA. It is quite possible that your headaches and leg pain is due to GCA and you need a higher dose of pred.

      https://www.ncbi.nlm.nih.gov/pubmed/11409140

    • Misha452
      Misha452 EileenH

      Posted

      Yes, Claudication pain is what I have in my calves.  My Rheumatologist says it isn't GCA because my temporal arteries are not inflamed. However, I am going to send him the links for these articles which are very interesting...and a little scary. Thank you.

  • pam48607
    pam48607 Misha452

    Posted

    When I was hospitalized a few weeks ago with the high fevers and night sweats, my sed rate was 98 (normal is 30).  After six days and the doctors not finding any "infection", they discharged me.   Three days later when I went to see a rheumatologist, she tested my sed rate again and it was 115!.   And believe me, I could tell there was inflammation in my body.   I had to pick up my legs to put them in bed.   So I do believe there is a correlation between high sed rate and  inflammation and that when the sed rate goes down, you start to feel better.  At least that has been my experience.   

       She won't test it again until I have been on the Prednisone for a month.   

    • EileenH
      EileenH pam48607

      Posted

      Possibly - but it doesn't always work the other way round. You can have a raised sed rate but it have nothing to do with the inflammation of PMR or GCA. The ESR/CRP are so non-specific that you can't say it is definitely one thing or another. Which is why high levels should be investigated to be sure it isn't something nasty that has been missed. Some people WILL have high levels for no reason - but they need to be sure.

  • Michdonn
    Michdonn Misha452

    Posted

    Misha452, I flared when dropping from 8 to 7 mg, with normal ESR. Becareful! Good luck.
  • kathy61958
    kathy61958 Misha452

    Posted

    Yikes! My sed rate was 54 and when it dipped below 40 my doctor cut me 5mg's. Let me tell you about a vicious flare! By the next morning, all I could do was lie motionless in bed. Any movement of my arms or legs sent me into a crying fit. My husband called my doctor, who immediately put my dose back up. That was all well and good except for the fact that it took nearly three full days to settle. Yes, dropping dose while your sed rate is still elevated can and does cause a flare.😭

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