I’m sorry to hear that!
Thank you! Yes, this is all very frustrating. My rheumy did not suggest prescribing the delayed release version because it is not available in the UK, not on NHS at least and pharmacies do not stock it, so even if prescribed privately it would need to be imported e.g. from USA, which would be very expensive and possibly not reliable. I am coming to an understanding that there is no safe and reliably effective medication for osteoporosis in the UK or maybe in the world, so we just have to assess risks and benefits and take the plunge one way or another. I initially saw my rheumatologist privately and he then transferred me to his NHS caseload. I would recommend finding one who also works for NHS in your area. I then ended up having all the tests and treatments on the NHS, just paid for the initial consult.
Thanks for this, Gala. I’ve spent some time trying to find a good rheumatologist specialising in osteoporosis/mbd who works both in the NHS and private sector. It’s been really difficult, so I’ve opted for someone who was highly recommended, who does NHS work but not that local to me, but I do also still have an NHS appoinment for later this year. It might work out more expensive but at least I should get good expertise and hopefully correctly diagnosed and treated. It’s unfortunate that the medicine you want is not available in the UK. Concerning too that you feel pretty negative about what is available. I’m new to all this but I hope you find a solution that works for you.
There are bone marker blood tests that can at least indicate how responsive your body is to bone medication. I get mine via rheumatology every 3 months. This may be only for injection medication though, not sure. If you have osteoporosis they have found people are better off starting an anabolic (often these are the parathyroid hormones) like Forteo, Tymlos and Evenity BEFORE getting too far afield on the biphosphonates. There are several YouTube videos by medical professionals on this.
That is so helpful - thank you so much. Shows the importance of doing your research, too. I was given Alendronate Acid by my GP which I’ve only started taking. It seems to be what everyone gets as a first medication. My NHS appointment with Rheumatology isn’t until October so I decided to get a private consultation as it all feels a bit one size fits all and I don’t even know the cause of my osteoporosis and just assuming it’s because I’m a post menopausal woman is not good enough. I shall definitely look at these videos and keep a note of all this and discuss with the consultant I’m seeing next month. I’m just so lucky I can - I really feel for those for whom this is not an option. Thanks so much again.