Hello my name is Jackie and I am 54, I want to tell you my PMR journey briefly to date so have left out some bits, but basically in January this year I had stiff painful hips and knees, so went to my doctor and had my blood tested, I was told all was ok (CRP 9.9 at this point) . Then in the following months I also developed stiffness in my shoulders and was unable to raise my arms to even brush my hair. I was very tired and may have had a slight fever during that time. I returned to the doctor in May and he immediately put me on 20mg prednisolone (but didn't repeat a blood test) and suggested that I had Polymyalgia, within a day my legs improved and within a week I could raise my arms above my head. All was well until I started to develop tinnitus after 2 weeks of taking the steroids, my hearing also started to get worse, for example I found it harder to hear people talking to me in a noisy enviroment. I have been sent for a hearing test and have been told that it doesn't appear to be auto immune related. So my Rheumy wants me to taper the dose quickly with blood tests every two weeks, as he wants to confirm the Polymyalgia diagnosis made by my doctor, rather than keep me on steroids when the cause maybe something other than PMR. So I have started to decrease the dose and am now at 12.5mg, so far none of my joint pains have returned but my hearing has got a bit worse and I am getting occassional pains in my ear, & in my jaw joint. I told my doctor but he says I don't have GCA. I am still very frightened about reducing the dose to 10mg which is what I should be doing if I continue to follow the Rheumy's schedule of each week reducing by 2.5mg until I am off steroids, only stopping if any of the pains return which would confirm the polymyalgia diagnosis. I have had all the help from experts that I could expect and normally I would feel very reassured but I don't, I feel alone even though everyone is trying to help and understand me, I feel they will soon start to lose patience with me. I don't want to have to lower the dose and get stronger symptoms of GCA, but the symptoms I have atm don't seem to be enough to convince anyone but me.
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