Having been seen privately by an eminent rheumatologist.......a leading authority in the field of PMR/GCA, since my diagnosis in May 2019, I decided to change to NHS care, as weirdly there is much more support available in between appointments when you're under the NHS than as a private patient!
I had my first telephone appointment this morning and although it wasn't with the 'big man' himself, it was with another consultant rheumatologist from the 'big man's NHS team. What a revelation!
I spent a good 40mins discussing all my issues and concerns (usually I've been lucky to get 15mins!) and this rheumy clearly was listening and 'hearing' what I said as he asked me lots of questions in return and then explained that he felt my current arm and leg pains were not a re-emergence of my PMR, but fibromyalgia! Obviously I still have PMR but he felt certain from my description of symptoms etc that PMR was not the cause of the problem in this instance. He recommended amitriptyline but fully understood my hesitancy to go back on them (that's another story!) and said there were several other alternative medications I could try IF I wanted to.
It would seem I have the full support of this rheumy, who agreed fully with my decision to increase my steroids independently at Christmas after a flare, and also agreed that my original tapering regime (given to me by my original rheumatologist) was too quick and by too much.......and should only have been by no more than 10% of previous dose.....as we all know!! He assured me that I'd be 'managed' through the lower doses to aid any adrenal issues and went to great length explaining his reasoning.
I felt confident that his recommendations were the right ones for me and I trusted his advice because he backed it all up with comprehensive and informative explanations that made complete sense to me. He also allowed me time to ask him questions when I needed to.
So, if any of you out there are feeling apprehensive or unhappy with the care you're receiving, my experience today has shown that sometimes a different pair of eyes (or ears in this case!😄) can put a whole new perspective on things. So.....onwards and upwards!
Yes!..... what a difference a day makes!