I haven't posted on here since last year, when my mum was diagnosed with GCA. Since then it's been a stressful journey for her, with little support from healthcare professionals, seemingly due to their lack of knowledge of the condition. I've used this site for information for my mum regularly, so thank you all for that.
My mum is currently on 16/17mg of prednisone , although rheumatologist said this week that he's surprised as he thought she'd be down to 10mg by now! At no point did he take into account how her symptoms increased when she reduced. Apparently, she MUST, be down to 10mg when he sees her again in 12weeks. Incidentally, when she said she'd read a book about PMR/GCA (Kate Gilbert's) he said she shouldn't be reading about her condition???
She's had really hideous side effects from the bisphosphonates, sometime losing 2 days, feeling nauseous and dizzy. She hasn't taken the tablet for two weeks and the consultant has suggested her having an infusion of Zoledronic acid which has to be given in hospital.
My mum's quite concerned about having yet another drug, and the potential side effects of this and I wondered whether anyone on here had any experience of it. Apparently, it will last a year.
Also, has anyone else lost their sense of smell? My mum hasn't been able to smell anything for a few weeks. She forgot to mention it to the rheumatologist, I think because she was quite upset at his attitude. She still won't let me attend her appointments with her ... Too worried that I'll lose my temper, I think!
Thank you in advance for any information you might have 😀