Still got the symptoms of PMR

Posted , 10 users are following.

As I've posted before saw the rheumatologist last week and got the results of my blood work, ESR at 9 CRP normal too. I am once again at a loss who to see. It's like the torn rotator cuff exacerbated all the stiffness/ pain that I had in the past . I did read that having high blood sugar can skew the results of an ESR. once again I took a little of the leftover prednisone the other day and it made me feel better ! I am still forcing myself to exercise and do stretching exercises even with the tear( no weights).should I press the issue or focus on Endocrinologist because of stopping levothyroxine ?

1 like, 10 replies

10 Replies

  • Posted

    Bert - if taking a small dose of preds is making you feel better I would go back to your doctor and speak to hem/she and see if they will keep you on a low dose for a short while and then slowly reduce.

     

  • Posted

    Hi Bert, just read your post.  I was diagnosed with PMR November past.  I was referred to Endocrinologist (I used to attend) and she referred me on to Rheumatologist.  If pred made you feel better then you need to tell dr. about this.  Also forcing yourself to do exercise doesn't seem like a good idea.  It's only my opinion of course, you make an informed choice.  Regards Pat
  • Posted

    Bert,

    I've had the experience of trauma being the stimulating factor in PMR start or return, one rotator cuff tear, one calf muscle tear. Also, I have somewhat "norm" ESR, while still inflamed. I think those of us with PMR can expect our auto immune to overreact to trauma, so not to be suprised by the rise of inflammation after trauma.  I've written on here about my experience  with trauma and PMR.  Good luck,

  • Posted

    Don't force the exercise - of you have PMR your muscles are intolerant of acute exercise and that may be what is causing the pain. 

    However - if pred works then you need to find a doctor who will listen to you. And you can answer the levothyroxine question by taking it for a while and seeing what it does rather than just stopping it precipitately.

  • Posted

    I've lost track of why you stopped the thyroxine. Or why you were taking it in the first place. Can you tell us again.

    In my case I don't see or have any connection between my hypothyroidism and my PMR apart from they are both considered auto-immune. The fatigue / tiredness symptoms were (in the case of thyroid) and are (in the case of PMR) very different. Simplistically one seemed more mental and the PMR more physical.

    My limited understanding is taking synthetic thyroxine for hypothyroidism substitutes for the real thyroxine not produced by thyroid gland which in turn reduces the TSH (Thyroid Stimulation Hormone) produced by pituitary gland - it no longer has to keep saying "produce more". There is a direct corelation between TSH measured in blood and the thryoxine prescribed to reduce it. Very stable, take same amount every day. No side effects. Improvement in energy levels almost instant on initial dose, loss of energy over a few days if stopping and thyroid gland can't make enough. The half life of thyroxine is 3-4 days. If I miss a day it doesn't really matter. I will be taking thyroxine for the rest of my life. Same dose every day.

    Pred is a steroid. There isn't a shortage of natural steroid produced by adrenals in the body. The glands aren't diseased. PMR has inflammation and pain. The steroids reduce the symptoms. It requires more steroid than the adrenals can produce. The ESR and CRP are unreliable indicators of PMR. There is not a direct relationship between inflammation / pain levels and measured ESR / CRP. Some have high ESR/CRP and few symptoms, others low ESR/CRP and lots of symptoms. They are not definitive tests, just indicators for some people. High ESR/CRP and lots of inflammation / pain is sometimes taken along with the all important "it reduces with prednisone" as confirmation of PMR. But, PMR can be diagnosed with low ESR/CRP. The expectation is that high ESR/CRP reduce with pred. As do the PMR symptoms - if they don't it isn't PMR.

    We take sufficient pred to suppress the symptoms of PMR enough to allow us to function. There are side effects which we don't like. We reduce the pred as the symptoms fade. Eventually we get back down to the natural body levels and can hopefully stop.

    Pred has a half life of a few hours. Hence our reduction of symptoms is cyclic if we take the pred once a day. A compromise. If I miss a day of taking pred I suffer (only make that mistake once). My picture is the inflammation / pain is reduced soon after taking it and builds up again slowly until the next daily dose.

    So. Taking Pred to suppress PMR symptoms is very very different to taking Thyroxine to substitute for low natural thyroid levels.

    We also take steroids for other, non-PMR inflammation.

    I've also lost track of what other conditions you have which I don't.

    If 'twere me I would sort out the thyroxine based on blood TSH. Then sort out the PMR with pred. Then rebuild the exercise as the PMR subsides. The pred will probably help the shoulder. If it doesn't respond to exercise / physio that requires different treatment. But I would give it time.

    Maintain careful balance between PMR symptoms, pred dose and activity. Increase activity leads to increased PMR symptoms needs more pred leads to more side effects and the illusion we can become more active. Reduce the pred too fast and the PMR symptoms increase and take over.

    Its quite possible that being active enough to tear rotator cuff was going to cause a PMR flare for you even without tearing anything. My experience is carrying the groceries from car to house is enough to cause discomfort at least into the next day.

    To be blunt .... I reckon you've overdone the exercise and have a PMR flare. Finding the balance, discovering how much activity suits you, is simply managing yourself around the PMR/Pred reduction that will hopefully go away with time. Learning to live with PMR can be a big step. Its a long term chronic condition, there isn't a quick fix.

    If you have a condition which requires the thyroxine then take it. Else don't.

    As to "which specialist?" I'm not much help. I'm fortunate that my GP sorts all this stuff out and my experience with specialists is they focus on bits rather than the whole.

    • Posted

      thanks muchly,

      I'll confess though, I had a bit of help from this forum and your good self to add to my own experiences of being me for many moons ....

    • Posted

      Then in that case - you'll be able to answer questions while I'm incommunicado in China later this summer! 
    • Posted

      Stopped the thyroxine because I was borderline hypothyroid. It was also prescribed by my PCP, and I guess I didn't trust her prescribing! I do know hypothyroid can cause muscle pain, and I've read that levothyroxine might cause the same symptoms. I' m guess just trying to figure if I truly have hypothyroid and if being on the drug that short of time would cause these symptoms . Bottom line, im going to make an appointment with the endocrinologist.

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