Hello Everyone, I would like to ask if anyone has managed to get the new drug for osteoporosis called Abaloparatide which was approved by NICE to be available at the end of 2024. My Consultant has been trying to access the drug for me but with no success so far. I would really appreciate knowing if anyone on this site has managed to get approval for it.
Thankyou.
Everything I read says it is supposed to be available. It is expensive which is always a problem for the NHS! There is also the post code lottery. I needed a device for my COPD. If I had lived in Cambridge it would have been free but I live in Norfolk so had to buy it myself. Cost £70.
Hi. I was offered this drug by my osteo nurse as it builds bones. I'm only 55 and have osteo for 20 years. Thus far not broken anything, but have it considerably in lower back and hips. I felt really positive when I was approved and he really "sold" it to me as my best option. Sadly, 10 days later the consultant rang and said as I hadn't broken anything yet, and it is quite aggresive treatment, they would no longer offer it to me,. However, I could have the old infusion instead. Call my cynical, but I am 100% convinced it is due to cost. I've never felt so worthless in my life. Good luck with getting it.
Hello and thank you very much for responding. I am so sorry that you were rejected for the drug and I think that you are right in your assessment. the criteria is for those who have already fractured but even then it has to be shown that the fractures are based on fragility and not trauma. I have three vertebral compression fractures. It remains to be seen whether or not I get it and should know later this month - I will let you know! Please know that you are not worthless, you are just a victim of our depleted Health service.
thank you. I just feel written off which is a rotten way to feel at my age. But the info on frailty fractures does back up more what she said. Perhaps I need to be less cynical! good luck
You are not cynical just realistic. Remember that you have time on your side and there is lots you can do to improve your score. Anything that reduces your chances of a fracture(s) has got to be good so give the infusion a go and find out as much as you can about other potential areas of benefit. If you are not already a member of ROS do join as their information provision and emotional and factual support is excellent. Where OP is concerned they are doing the Government's job for them and doing it well!
Chin up!
Sorry about the 'Chin Up' at the end of my message. I can really understand your feelings of despair at this situation in which you find yourself and would not want you to think that I was minimising that. The pain from my fractures has brought me to tears in the last year along with a sense of hopelessness as I continue to fight for medication but I will not give up and nor will you!
Take care.
I found your message very comforting, so no need to apologise. I've kept op in the back of my mind for 20+ years now. I always said worry about it later, now I feel like later has come. Well done for not giving up, I will try and maintain my bones as long as I can. Take care
ps I am a member of ROS and I have found them really helpful
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