Hi, I have atypical Polymyalgia have had the symptoms since OCT 2011, but did not start steroids till Dec 2012 due to Rheumy undertaking many tests as she felt I was too young to have Polymyalgia, despite having all the classic symptoms. My inflammatory markers have always been near normal.
At the end of March this year started getting burning pain in temples, tingling tongue and jaw cramping, whilst waiting to see Rheumy my GP and A+E increased Pred to 30mgs. This helped but did not remove the symptoms. When I saw Rheumy in May she insisted it could not be GCA and instructed me to reduce back down, and ordered a CT of head. When I saw her in July I was on 10mgs but the temple pain, tongue tingling and jaw cramping were continuing, she said CT was fine and asked me to continue to reduce. I am now at 8mgs and due to see her tomorrow. However since reaching 8.5mgs I have started getting tinnitus in my left ear, which is the sound of my pulse and it occurs every night keeping me awake, my tongue has also started twitching and making a noise in the night. The other symptom I have had since this all started is excessive sweating and exhaustion. I had put sweating down to hormones, I am 48, but my hair can be soaked up to 5 times a day. I seem to be developing more and more symptoms of GCA, but Rheumy is adamant Im too young, GPs agree it is unusual. Im struggling to cope day to day as I work and can lose 2 nights sleep a week, any suggestions on how I should approach Rheumy tomorrow?