I know this is not a medically trained forum but it has become my ‘go to’ for advice before I see my GP. Hope you don’t mind! I like to feel equipped when I attend my appointments.
I appear to have fluctuating blood calcium levels and parathyroid levels. I believe most of this might be down to having been on steroids for 2.5 years. When do we know to be alarmed or act on anything when steroids can mask so much or actually cause it.
I have read several posts about Vitamin K but I’m never sure if I should add it or just stick to a healthy diet. I don’t take Adcal or Alendronic Acid. I had a dexa scan and all well, recommended not to take AA and I’m on the waiting list for a follow up dexa as it will be two years since first one.
At my last rheumy appointment in June he confirmed he believed I had some sort of inflammatory condition but less sure about PMR. I think he came to that conclusion because I can’t reduce my steroids quickly enough “in his opinion” I did ask what else it might be and would it still come under rheumatology which he suggested it would.
As we all reflect on our appointments it’s then difficult to ask any more questions.
I suppose I’m thinking do we ever know if we have PMR for sure? How do we enquire about other possibilities and investigate them? At present I feel the only option I have is to try methotrexate as recommended by my rheumy but he has left it up to me and I don’t see him again until February 2019 so plenty time to do nothing. But it’s another 6 months of do or don’t I, with no real answers.
I am rambling a bit as so much comes to mind when you start writing so apologies. I think I’m continually thinking about this condition we have. Every day has a bit of pain or discomfort or stiffness so it’s hard to forget!
Dx March 2016, starting dose 20mg, now struggling around 10, but struggling so hence my continued ‘thinking’ ! Oh and a couple of flares along the way 😁😂