Denosunab

[Bella478]

I’ve been having injections for about 3 years, recent blood tests showing high cholesterol and high liver count. I have been thinking about stopping the injection but couldn’t tolerate alecdronate acid . Has anyone had serious consequences when stopping Denosunab? I’m in good health, fit and haven’t suffered fractures since I broke my femur in2017 following slipping over.

[Arcadia10]

You will find many posts on this site from people who stopped Prolia without transitioning to a relay drug for one reason or another. Just search "Prolia" and "rebound" or "fractures" (without quotes) in the search box on the top right-hand side of the page. The stories are predominantly very tragic - and a lesson that this is not the route to take. Unfortunately rebound fractures affect between 10-15% of people who discontinue Prolia, so stopping without transitioning to a relay drug is very risky.

Like yours, my cholesterol also shot up while on Prolia (4 injections), as did my parathyroid level which doubled. I had many other far more intolerable side effects which led to my discontinuing Prolia two years ago. I transitioned to Actonel for 18 months - and had 3 fractures last Sept 2021, fortunately not thoracic or lumbar, and so not disabling in the long term, but really painful and a nuisance at the time, being in hospital and on crutches for 6 weeks, etc. I think what occurred was mostly my fault, as I pressurised my endocrinologist to let me start weaning off the Actonel after 18 months, far too soon. From what I've read, it is important to take the relay drug for at least 24 months. I've also subsequently learned that Actonel doesn't work very well in suppressing bone turnover post Prolia. Fosamax or Reclast are the gold standard as relay drugs, Actonel being less efficacious.

So be very careful in what you decide to do. Most people who start Prolia these days are told that they will be on it for life. Because of that caveat, I understand that Prolia is no longer being recommended as a first-line drug without trying a bisphosphonate first in case patients have to stop Prolia - and if they can't tolerate a bisphosphonate, then what? It sounds as if you've tried that already. Reclast is an IV drug, so it bypasses the digestive tract, so might be an option if you're determined to stop Prolia.

[Bella478 in reply to Arcadia10]

Thank you for your advice. I will discuss with my GP but have never really looked into all the side effects of Denosunab before and it is concerning. Thanks again for your reply and I’ll have a search on the site

[Mavary]

Hi. Five months into changing from Terraparatide to Denosumab I had four more fractures. I’ve been stable for nearly a year since. I would firstly try and find out if it was the Denosumab that has caused this. I don’t know but I’ve got a suspicion it may be something else causing it. You need to speak to your Dr and consultant. Don’t just come off it. You are supposed to take Denosumab for life. So please get advice.

[Bella478 in reply to Mavary]

Thanks for the advice, I will talk to my GP as It is quite worrying what can happen if Denosunab is just stopped

[Posy-White]

Hello Bella478

Sorry you are having medication problems. I see you are in the UK as well as seeing you GP would it be an idea to phone one of the specialist nurses at the ROS helpline just to get a few ideas and pros and cons of the different transition medication?

Can I urge you not to take the risk of just stopping Denosunab – Before my local hospital realised the danger of ‘just stopping Denosunab’, it was suggested I stopped – as dexa scan so good etc. I was very health and physical fit, running, yoga, camping and walking holidays never had an Osteoporosis fracture and had a full time job, which I loved. As a result of “just stopping” I had 8 spinal rebound fractures, lost 12cm in height, lost my job, and four years on am learning to live with pain and disability.

Not worth the risk!

I hope you’re able to find a more suitable medication, best wishes,

Posy White

[Bella478 in reply to Posy-White]

Thanks so much for your reply. So sorry to hear of you situation, I know I’m very fortunate compared to many others. I will definitely get advice my next injection not due until September so hopefully time to discuss with ROS and GP.