Told its not pmr but osteoarthritis reducing pred.

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Hi all not been here for a while. Seen rheumatologist and consultant at pain clinic. Been told its not pmr but osteoarthritis. Reducing pred and am now on 3mg a day. I get bad pain in hips and lower back also my shoulders they put this all down to arthritis. They only pain relief I have is paracetamol which doesn't do a lot. First diagnosed in 2017 and given the usual dose of15mg. I then thought it was a miracle cure as all pain went since then downhill and the pain I have now is worse and constant. Any help from this knowledgeable forum much appreciated.

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  • Posted

    I am no expert but if it was osteoarthritis why would the pain have completely disappeared when starting pred? I presume you have had x-rays to confirm the new diagnosis? Could it be that the dose you are on is now too low which is why the pain has returned?

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    • Posted

      I have been told to reduce by 1mg a month until zero. I probably won't be able to request anymore. the next rheumy appointment is in 6mths which I have yet to receive. if they are wrong and it is pmr I will be back to where I started. I have had ultra sound and ct scans and xrays too most show arthritis the ultra sound showed inflammation around the joint. now I am on the waiting game until I see a Dr at the end of month.

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    • Posted

      Kathleen please take care. I appreciate that scans/x-rays indicate arthritis but you could still have PMR still running alongside couldn't you? I was in the same position-being on 3 mg, having managed to get myself down from 20, to be told by a doctor at my GP clinic that I needed to get off asap and she was going to reduce my prescription. The result was a massive flare and had to go back up to 12, supported by a more sympathetic GP, to get it under control.

      I found this group as a result thank goodness.

      9 months later I am down to 4.

      The big lesson I have learned is listen to your body and stand up for yourself.

      Good luck- stay strong.

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    • Posted

      What motivates these unsympathetic GPs who want to bully their patients into inappropriate reductions? If you were down to 3 and doing ok what was the hurry?

      Glad you found someone better informed.

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    • Posted

      I think that some doctors are 'ticking boxes' and probably only attended a half hour lecture in their training on PMR so have limited understanding of our condition. I blame myself for being too polite!

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    • Posted

      I know - my reaction to above comment was PMR may or may not be mentioned in passing, perhaps as something to exclude when diagnosing a more prominent ailment.

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  • Posted

    Why do they say it is OA and not PMR? When did the pain start to return - as in, at what dose?

    I do wonder why they are happy to make one diagnosis in 2015 and now say it isn't that? Are they of a school that believes PMR doesn't last that long? Its median duration is 5.9 years - so if that is their line, they are wrong:

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

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    • Posted

      The pain came back at I think 8mg could have been lower I have been. going to the Hospital for lots of different things. The article was very interesting all my doctors should read it. Next rheumy appointment in 6months. My next blood test next week for thyroid perhaps inflammation will show up then. Thank you all for replying .

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    • Posted

      That doesn't mean it is NOT PMR. Pred doesn't CURE anything. It is a means of management of the symptoms until the underlying autoimmune disorder burns out and goes into remission. That may be in a couple of years for a few people, for a lot it is maybe 4 or 5 years with the average time of 5.9 years. Some of us have it for many years, even life.

      Just because pain came back at 8mg doesn't mean it isn't PMR. But it was the sign you should have stopped reducing then - or at the very least should have slowed down.

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  • Posted

    hi That is confusing pred eased your pain now they say it isnt pmr ,I know when i had my rheumy examination the xray showed early stages of arthritis in my shoulders and knees ,i understand that but he said pred wouldn't help this but because of the blood tests the pmr was present , I see him again in March so many questions now to ask him after seeing this forum

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  • Posted

    The second time I had PMR it went on and on and my doctor asked me to see if paracetamol would help the pain that kept recurring. It didn't. But the pred . certainly did help my long standing OA.

    If we could just have one condition at a time it would make everyone's lives easier but no such luck.

    I see that Maureen's doctor told her that pred. wouldn't help the OA pain. That's just not so. If he meant that pred. wouldn't cure the OA, fair enough but s/ he should have made that clear.

    It took me more than five years to get from 15 to nil.

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    • Posted

      Kathleen

      I see that a reply I sent to you has been deleted. Not sure whom, if anyone, I've offended.

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  • Posted

    I had osteoarthritis before I was diagnosed with PMR. the osteo is in my lower back/hips and hands. The PMR arrived in my thighs and buttocks. It is a different sort of pain, seeming to be more in muscles and nerves. Prednisone not only helped with the PMR, but also with the other. As I taper the prednisone, I will go back on to Tylenol. I cannot take anything in the Ibuprofin family.

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    • Posted

      I get the pain in hips lower back and neck I know it's arthritis in my knees . I have just sent for turmeric capsules has anyone tried these for pain relief was previously given gababentin but didn't find they helped. I like you can't take ibuprofen or any aspirin and codeine. thanks for answering.

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    • Posted

      HI kathleen I went for Tumeric from our local health shop and he advised me to ask the doctor first because of the meds I am on ,apparrantley you have to be carefull .

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    • Posted

      There was a program on radio that reckoned fresh or dried turmeric for inflammation was a lot better than the capsules. They had done some research on it, I am not sure how good the research was!

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    • Posted

      gabapentin didn't do much for me either except make me sleep more. that is the main reason why I looked into turmeric capsules. my Dr said it was ok to take but I still feel unsure, need a little more convincing.

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