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After 8 years of PMR I have relapsed AGAIN

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Guest
Guest

I Flared up again in 09/2017. I have never been down to zero on Prednisone dose, but I was comfortable at 5 mg for years. My doctor insisted that I tapered to zero every time I increased my dosage for relapse. I have been up and down since last September. I am currently at 7 mg, but I haven't been comfortable since I was last at 10mg. I am almost as bad off as I was in 2010 with PMR. My doctor's now refuse to give anything above 7 mg, because they my blood work does not support PMR diagnosis. I would really appreciate advice on what to. Thanks

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  • Bethune
    Bethune Guest

    Posted

    Oh wow!  Every doctor  should know it is the symptoms not the labs that define PMR.  My doc calls it sero-negative PMR and RA. 

    I am so sorry.  Can you get a different doc.?    5mg is totally OK and not harmful to your system. 

    • Guest
      Guest Bethune

      Posted

      I am searching for a doctor, but intend to get a real good one, which is not easy for PMR. I have seen 7 GP,s and 2 Rheumatologist. Of them all only one knew how to taper Prednisone for PMR and he retired 4 years ago. If I can ever get back to 5 mg I will try to stay there for a long time, but for now I will have to keep going up until I get comfortable. The doctors I have seen this year are afraid to go more than 1 mg. This relapse is so bad it hard to wait it out 1 mg at a time.
  • Sue_Ellen51
    Sue_Ellen51 Guest

    Posted

    I tapered down on my own a year ago....my  rheumatologist never had a problem with my dosage.  My last visit he said most of his patients always get stuck on 1 Mg.  Several  missed my diagnosis so we went on a diagnostic quest for several years.  I would find a new doctor.  Has he checked your sed rate for inflammation.  
    • Guest
      Guest Sue_Ellen51

      Posted

      I have had the sed rate and c reactive protein and many more. Sed rate was very high when I was diagnosed with PMR, but not much now.
  • Daniel1143
    Daniel1143 Guest

    Posted

    Gene, with all due respect your doctors are displaying a great deal of ignorance about PMR. A very significant percentage of us with the disease have never had an elevated CRP or Sed rate. So when the doctor says your bloodwork does not indicate PMR… well to be honest they don’t know what they’re talking about. Their conclusions they probably read out of the book. Were they to pull the global marketplace of those of us with PMR, theyd find a very different outcome. 

    In truth, what you need is a rheumatologist who actually knowssomething about PMR and more than they’ve read in a text book. Perhaps you might suggest to your rheumatologist that they spend a day on this website.

  • constance.de
    constance.de Guest

    Posted

    Hello Gene.

    Sorry about your long haul with PMR and being saddled with a naff doctor.

    Eileen (our expert) will be along sometime and will give you a link to an article from the Mayo Clinic which you will be able to show (I hope) to a NEW doctor.  He/they won’t be able to ignore that.

  • pauline36422
    pauline36422 Guest

    Posted

    i took the mayo clinic  copy to my doc   a while back,   and since then  he has not  tried to talk me down to zero pred.  he just says you know what you are doing .   so keep on with the pred,    i got down to 1 mg   had a flare about   7 weeks back   so i went up to 4.5   and now i am back to 3mg.    with just a little  pain   i am in my 6 year of pred
  • EileenH
    EileenH Guest

    Posted

    I'd find another doctor I think. I know how difficult that can be.

    I suppose your problem is that you are one of the people who don't show inflammation as long as they are on some pred - it seems to happen quite often, even in people who had a high ESR/sed rate originally. 

    I had been happy at 5mg for quite a time and then had a very strange flare that needed 15mg to control. It started with breathlessness and dizzy spells and we thought it might be heart but it wasn't. Then after about 3 or 4 weeks the typical hip problems appeared - FLARE! Since then I have got down to 7mg but then have problems, not so much the PMR as heart: I have atrial fibrillation and it is awful at 7mg, better at 8mg and gone at 9mg. The rheumy just looked baffled and said that wasn't his field (he actually had a friend with him who does cardiology but didn't  ask him what he thought!). Since then I have experimented, confirming the 7/8/9 effect, and given in to the rheumy and tried methotrexate for 4 weeks. No more - that was as bad as giving up pred altogether! But the link between the pred dose and the atrial fibrillation is my real concern - if I need a bit more pred to manage that well I have no qualms at all but the rheumy obviously does. He did say he'd be happy with just a couple of mg less on the methotrexate. Which I think is crazy - 2mg extra pred can hardly compare with the effects of taking methotrexate can it?

    • Bethune
      Bethune EileenH

      Posted

      Oh how I wish I could get back to 5 or even 10.  I’m stuck at 15mg pred.  I’ll keep trying but I’m having a good life and will not trade that in.  The first Time I took methotrexate it worked, and no side effects.  That’s how I got to my 9 mos. pred. free, but Not the second time., I Did not like the side effects., So I’m not trying again.  Like you. 8 years  managing PMR,  but really it’s been not too bad, though I get a bit freaked out

      ( short term) when the flares happen. 

      Right now just hoping recent sports injuries, don’t cause a flare.  My PT did needling on my right piriformis.  Which is injured from too much soccer, and my whole upper leg quadrant.  I will ask her not to repeat it because I think it could aggravate the muscles and cause a flare. At 15 I’m always a bit worried .

      Thanks for all your info Eileen and I feel for you being on the LOOOONG PMR journey. We are the smaller group. 

    • EileenH
      EileenH Bethune

      Posted

      The figure I had been told was 5% - but someone said the other day their doctors both individually said 30%. Maybe we aren't as lonely as we thought!

    • ptolemy
      ptolemy EileenH

      Posted

      I think that that the two doctors might have read a similar article which was wrong or muddled. It is highly unlikely looking at the literature on PMR that one in three people have to continue on steroids for life particularly as a lot of doctors seem to think it goes away in two years! 
    • EileenH
      EileenH ptolemy

      Posted

      I thought that too - or maybe these are a couple of doctors who had a very skewed population of patients or listened more than average to patients who relapsed. I suspect a lot of older patients DO end up having either having PMR for the rest of their lives or needing a low dose of pred because of poor adrenal function.

      OTOH, I was often told I was in the "top 5%" going to grammar school and uni (it was many years ago) - I would be more than happy not to be in the "top 5%" of PMR patients. These "exclusive clubs" are rather over-rated I feel ...

    • ptolemy
      ptolemy EileenH

      Posted

      Could be they were some of the rubbish doctors of course and caused relapses all the time, I can mention an ex rheumie in that category! 
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