I am female, nearly 70, in the last 20 years I have developed multiple allergies and intolerances, so my diet is quite limited. I take D3, B12 in a spray, and try to incorporate calcium in my food, eg tahini. Vitamin C with plenty of lemon juice. I have never smoked and can't drink alcohol. I am pretty thin at 7 stone, height 5 foot 1 and a half (unchanged) I am very small boned and have never had a fracture.
I was diagnosed with Osteoporosis after a DEXA scan 14 years ago. I was put on monthly Ibandronic Acid (Bonviva) by my GP. I was OK on this for a couple of years. Another GP changed it to Alendronic Acid tablets weekly, but I got stomach pains and stopped taking them. She offered me antacids medicines but refused to change me back to Bonviva " because it isn't as good"
In 2006 my T score was -2.9 at hip, -1.9 at the spine.
After 6 years of Alendronic Acid and Ibandronic Acid (inc pause when I didn't take the Alendronic Acid because of stomach pain)
In 2015 my T scores were -3.8 at hip, -2.3 at spine, -3.9 at NOF
I had been doing Pilates for years, but was finding it difficult to keep up so I decided to get help for my CFS, and saw an endocrinologist privately. He gave me a lot of good coping strategies and also asked for me to be referred to the local bone health centre. So now I am cared for by the Rheumatology department. I was re prescribed the Bonviva!
I have seen them a couple of times. At the last one the consultant was happy with my DEXA scan, saying my hip had improved 14%, and he was inclined to keep me on the Bonviva.
Fast forward to now! Last month I had my routine DEXA scan followed by a telephone consultation with the clinic nurse. She says my hip score is declining, although my spine is "OK" Didn't tell me my scores. The consultant wants to start me on Prolia, and she sent me a leaflet and blood request form in the post. This is quite funny because I haven't even had my routine GP blood tests (CKD3 and thyroid) for a year. Are my teeth OK? Not a clue because my dentist isn't seeing anyone for check ups. Nobody's fault but I feel there is poor back up at the moment, and if there is a problem it will be difficult to get advice.
I have been looking into Prolia and really don't want to take it. There is no way to phone the Rheumatology dept, I could email I suppose. My GP has online consultations but not sure she would take my concerns seriously.
Getting back to the CFS. I over-did things earlier this year and have been in a massive "crash" for months. I am barely functioning, so exercising is really difficult. I have recently discovered a method of pacing by monitoring pulse rate. We have a pulse oximeter, bought in case of covid19, and it shows me how little exertion is needed to send my heart racing. There is a formula for calculationg one's "safe" limits, and I am trying to keep my rate down below 90. Something as simple as sorting laundry will cause it to shoot up to 135. The lowest I get after a quiet evening is 70ish. I note that one potential side effect with Prolia is arrhythmia.
I am hoping that at some point I will recover some spare energy. It is a really bad patch at the moment, but I know this disease does fluctuate. One bonus with the constant resting was my IBS had vanished...that was a surprising development! Of course it is back now I am worried about the Prolia treatment
I would really appreciate advice on how to raise this with my consultant. In person he is extremely nice but I can't talk to him at the moment. The only thing I can think of is to send a message via the nurse that I'm unwell and don't feel able to make a decision at the moment. How long can I delay things? I would like to get some energy back and maybe investigate weight bearing exercise with a physio or similar. I feel very anxious but as my name implies I am ever hopeful!
Many thanks if you have read this far.