Increasing unrelenting pain - PMR?

Posted by elizabethjoan @elizabethjoan, Sep 30, 2022

I am not sure where to put this question so feel free to move it. After about a month of the usual symptoms of pain and stiffness I was diagnosed with PMR in early July , saw a rheumatologist immediately and was put on 20 mg prednisone. By the end of July I was down to 15 mg. I still had some pain…moving all around ….but manageable although I was still having to add Tylenol and Advil to the mix. Stayed on 15 mg until mid Aug and then went to 12.5. The pain worsened and I went back up to 15 within a few days. Early Sept decreased to 14 but quickly had to go back up to 15 again. We live in Nova Scotia Canada and are having a pretty major hurricaine…no power, lugging buckets of water, very stressful time and physically demanding. The pain got so bad I bit the bullet and went back up to 20 mg😫😫 on Sept 24th. However my major concern is the pain has not resolved at all. It is only in my right knee (10) and some in my thigh and calf…(4). I find it scary that the prednisone increase has not helped. Could there be something else going on ?? Any ideas????
Sorry to be so long winded….

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@shesnuts

I'm having the same symptoms. They started me on 10 then 40. I did well for a few weeks and little pain, they cut me down too 20 and the pain came back and now I'm up to 60. I still am having pain. It scares me too taking CBD drops seems to help numb it.

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My situation is very similar. I started at 20mg, which did nothing. 40mg was magic--took away most of the pain. I tried to taper to 30mg, pain came back full force. Now I'm back at 40 but have more pain than before (though not a full flare). I have all the unpleasant prednisone symptoms and hate being on such a high dose, but there seems to be no other way of controlling the inflammation. CBD drops help me a little, but not much. My dr told me I have an unusually bad case of PMR and it might be a long road. I hope you get some relief soon.

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Update….I have been feeling worse and worse over the last couple of weeks but the big change is in my hip X-rays. Due to the unrelenting pain in my right leg I was sent to see an orthopaedic surgeon. She did X-rays of my hips. In early July my right hip showed a relatively normal hip with expected changes due to aging. However, the X-ray last week the X-ray showed a totally destroyed hip joint and I am now a candidate for a total hip replacement. How is this even possible?
I am also feeling systemically ill….no energy, no appetite, nausea, weight loss of almost 10 pounds in a few weeks, difficulty moving, difficulty sleeping.
I am definitely wondering if my diagnosis of PMR is accurate.

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