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Unsure if PMR and rally scared!!

Posted , 11 users are following.

Canadian1957
Canadian1957

Folks,

I would really, REALLY appreciate your insight and guidance as I’m scared.  They think I may have PMR although the tests are quite inconclusive other than to show an elevated autoimmune marker.      But I have / had the classic symptoms such as overnight onset of severe shoulder, leg and hand pain; weight loss and extreme fatigue.    Interestingly 90% of the joint pain symptoms have disappeared but I do definitely have the weight loss and extreme fatigue.  I will start Prednisone as a bit of a trial to see if that helps…..and if it does help, it’ll help narrow the diagnosis.   (The sedimentation rate (ESR) and C-reactive protein (CRP) figures are normal….or pretty darn close to it apparently.)

So my question is, is it possible to have the weight loss and extreme fatigue without the use of medications even after the joint pain has virtually disappeared??

Any input would be hugely appreciated.     Thanks.  

0 likes, 29 replies

29 Replies

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  • nervebyte
    nervebyte Canadian1957

    Posted

    Fear is a natural reaction to illness so your fear is common the the possibility that you may have pmr....but don't fear because whether you have it or not your life will unfold as it will. "Weight loss and extreme fatigue without the use of medications even after the joint pain has virtually disappeared" can be a reaction to other factors, including fear. I've had pmr for over 2 years and in the beginning fear dictated a good deal of my stress. Now, two years down the road I continue to be symptomatic (degrees of pain & discomfort, stiffness, periodic fatigue, some weight loss) however I've mainly chased fear away through exercise, being active, mainly inflammation diet, some prednisone and medical cannabis (high in CBD) when needed. My ESR continues to be high however my body indicates that regardless. So I bid you good thoughts and accepting what is before you while doing your best to find ways to live life regardless. Passing on good energy!

     

    • Canadian1957
      Canadian1957 nervebyte

      Posted

      Nervebyte, thank you soooooo much for the encouragement.   I really, really need it!!     Thanks.  
  • ptolemy
    ptolemy Canadian1957

    Posted

    If it is PMR and you are like me, the pred will work like magic, one day I could hardly move and the next day I felt nearly back to normal. If you say most of the pain has disappeared though without medication, it does not sound so much like PMR.

    Do you know what the elevated autoimmune marker was? I get printouts of all my blood tests so I can see how things are progressing.

    Around twenty per cent of people have inflammation markers that do not increase, which can be a problem as doctors tend to think there is nothing wrong or look at the wrong diagnosis. 

    • Canadian1957
      Canadian1957 ptolemy

      Posted

      Ptolemy, I don't know what the numbers are, but will find out and advise.   Thanks!   

  • daniel08939
    daniel08939 Canadian1957

    Posted

    I have had pmr twice and both times all the blood tests indicated I did not have it. I believe that the most telling symptom is the sever shoulder pain. The rheumatologists are confused but they acknowledge that the results I have on Prednisone suggest (their word not mine) I have pmr.

    What made 90% of the joint pain symptoms disappear?

    • Canadian1957
      Canadian1957 daniel08939

      Posted

      Daniel08939,  I have no idea why the pain disappear.....it just did (for the most part.)   Bizarre I know......and maybe even more worrisome (?).   Did you / do you have the fatique and weight loss stll?
    • EileenH
      EileenH Canadian1957

      Posted

      Don't worry about the weight loss if it IS PMR and pred works - pred will soon sort out your weight loss if you aren't careful!!!

    • Anhaga
      Anhaga Canadian1957

      Posted

      I've been thinking about your post since reading it earlier today.  I didn't have joint pain.  In fact I thought for the longest time I was suffering from osteoarthritis and wondered why I felt pain in muscles not joints!  However over the course of fourteen undiagnosed months the pain did wax and wane.  I'd forgotten that part.  In the end, however, I was becoming crippled and fortunately I finally encountered a GP who recognised what was going on and I was a lucky one who responded to the miracle of pred quickly and have had a relatively uneventful, if lengthy, weaning process to today's low dose.  I had weight loss and have not regained it (diet and exercise helped there) but fatigue has only been an issue for me since lower doses of pred and apparently lazy adrenals. 

    • daniel08939
      daniel08939 Canadian1957

      Posted

      I can only fantasize that my pmr would result in weight loss. That would be the best diet in town. I never had weight loss but did have weight gain. Fatique has been an issue with me. I tire easily when walking, playing golf or doing routine chores.
    • daniel08939
      daniel08939 Anhaga

      Posted

      One of the confusions in my case is I have both pmr and osteoarthritis

      Some physical therapy is helping with the range of motion and strenght of my shoulders but it does nothing for the pain. Only prenisone.

    • Anhaga
      Anhaga daniel08939

      Posted

      I do too but the OP seems to be little problem, except my hands and feet.  
    • Canadian1957
      Canadian1957 Anhaga

      Posted

      Anhaga,

      Thanks so much for the insight.   I started Pred this morning in fact.....so we'll have to see I guess.    I just hope it makes the fatigue disappear......that parts awful!!!     Thanks.   

    • ptolemy
      ptolemy Canadian1957

      Posted

      I must admit pred never helped the fatigue in my case, it did work marvels on the pain though.
  • shelley45866
    shelley45866 Canadian1957

    Posted

    I lost 15 pounds of muscle in 15 days, had no joint pain, did have muscle pain - all before starting Prednisone.  The Pred stopped the weight loss and the pain.  My CRP and ESR were high before the Pred, came down to reasonable after starting Pred.
    • Canadian1957
      Canadian1957 shelley45866

      Posted

      Thanks so much Shelley!    I'm really hoping for the best.   Did you / do you have the fatique before or after the Pred.?

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