Hi. I'm Sarah, I'm 56 & last Autumn I got PMR.
First, thank you to all of you who participate in & overview this forum. It has been a lifeline.
Early last November, after a month of sheer hell in rapidly increasing pain & ever more severely restricted mobility, I was diagnosed with PMR by my doctor. After 3 days of Prednisolone at 15mg the difference was almost miraculous. For weeks I improved noticeably every day. My ESR & CRP went from very high to normal.
Then I got a cold at Xmas & the PMR stopped getting better. It has been up & down ever since.
At my Dr's request, I tried to reduce the Pred a little, but immediately deteriorated, so went back to 15mg.
I was referred to a Rheumatology Specialist at the beginning of Feb. She said that my continuing symptoms don't make sense. Wondering if the PMR had triggered Rheumatoid Arthritis, she arranged xrays of my hands & feet, but they don't show anything unusual. An ultra sound showed that my shoulder is damaged & the tendon narrowed, but again there is no sign of RA. No sign of RA in bloods either.
The Rheumatologist said that I have to get the Pred down & suggested alternate days on 15mg & 12.5mg. Within 3 days I had deteriorated severely so I stopped the reduced dose. I had terrible pain in areas that hadn't been affected before. I continued to get much worse for a fortnight & after that still deteriorated slowly for a further month. By then the PMR was much, much worse. It has taken me months to get back to where I was before. All this still on 15mg Pred.
I've not suffered any stiffness & little swelling, (initially I did have some swelling between finger joints & on the side of my foot) just bad pain in my arms, legs, shoulders, knees, the palms of my hands, some of my fingers between the joints & only after trying the 12.5mg reduction, my feet. My legs & arms are extremely tender to touch. My hands are pretty useless & often shake & my circulation has gone completely to pot, particularly in my feet & hands.
The Rheumatologist wants me to reduce the steroids & go on to Methotrexate, neither of which I am happy about. I see her again in 2 weeks & I'm really worried about the appointment.
Any advice would be much appreciated.