Hi there, I am 49year old. Almost 3 years ago I developed pains and stiffness in neck, shoulders, bottom, hips and thighs. After 14 month of suffering I was diagnosed as "Atypical Polymyalgia Rheumatica", and started Prednisolone in Dec 2012. 3 months after starting steroids I developed symptoms of GCA, which I'm at risk of getting. Initially it was burning temples and jaw cramping, followed shortly later by tongue pain with ischaemic patches. The tongue until recently kept me awake 2 nights a week with continual spasms. My Rheumatologist calls them fasciculations. I also have pain behind both ears which is tender to touch. After 7 months of continually expressing my concern re symptoms, Rhrumy did a temple biopsy. By this time I'd been on Pred for 10 months and was told to expect a negative result. I then had MRI of the brain and orbits which were normal.
I was then transferred to another Consultant, as mine left the a Trust. This new Rheumy refuses to discuss these symptoms, when I mention GCA he states "not in my lifetime" . My friends and family feel I should take the route of a specialised vasculitis clinic. What are your views on this, and if so scan anyone recommend one with a specialist who is open minded re age, bloods etc. I live in a Deal and am prepared to travel. I have a daughter who lives near Hammersmith, but would be prepared to go to Cambridge if needed.
I am currently on 4.5 mgs of Pred, and 150mgs Azathioprine. Since being on top dose of Aza my tongue has stopped twitching, and the burning sensation I had along the sides of my tongue is gone. Still get discoloured patches that throb. Each time I reduce Prednisolone I develop more GCA type symptoms: pulsatile tinnitus; cramp in right arm; vertigo - some of these have also improved as Aza has been increased. I am however nervous each time I reduce hoping it's not my vision this time. I would value your opinions on if a specialised vasculitis clinic would be beneficial and any recommendations you may offer.
I apologise for the length of this post, Regards Runrig x