Can I just ask if anyone out there has been taking Denosumab for a number of years, and been taken off it now? Have they experienced multiple fractures or jaw issues on the rebound or been fine?
Obviously you need to be prescribed another treatment straight away which I understand, although I have already had Boniva, and Zolendronic infusions.
It would be helpful to know. Thanks.
I took Denosumab for 4 and half years. I came off it over 2 years ago. Touchwood, I haven't had any fractures or jaw problems. I did have one dose of intravenous Zoledronic acid after stopping Denisumab, but due to terrible side effect from it I refused anymore.
I had Denosumab for 7 years and was then taken off it in 2021 as my previous two DEXA scores were stable, although still in osteoporosis range.
I had a Zolendronic infusion to then hopefully lock in some benefits and then had a drug holiday for a couple of years. My next DEXA score showed a big drop in bone density and I'm now on annual ZOL infusions, have had 2 so far.
Talk to the ROS nurses, I've subsequently found out that there needs to be quite a bit of care around coming off Denosomab.
I haven't had any fractures or jaw issues thankfully.
Good luck.
hi probably not relative but I had to wait a month between my Denosumab injection. My vitamin D was too low. Because I had to wait my back fractured four more times. I must say my dexa scan to start with was -5.5 so my bones were pretty bad anyway.
hi, I was on denosumab for 5years (2014-2019) and was prescribed Risedronate which didn’t prevent 3 rebound fractures and a loss in height of 2 inches.
I think there is a lot more awareness around this treatment now, it was fairly new on the market when I was prescribed it. The hospital were not in any way helpful at the time, it was over a year before I got to see the consultant .
I hope this helps.
Yes it certainly helps me, thank you for sharing.
Hello Boneness
I stated denosumab injections in 2012, i moved areas in 2014 and had to change hospitals. After a dexa scan in June 2017 put me in the 'mid' osteopenia range. The local little hospital said I no longer needed medication, I had done some reading about the drug as it was at the time when although the company making Prolia was issuing warnings about not just stopping, but it had not been the advice in the UK until September of 2017. I tried to suggest that I should not just stop but was told, I'd still have 6 monthly blood check and besides the hospital could not give me a prescribed drugs for osteoporosis when I didn't have it(!)
At the end of October 2017 I woke in the night with back ache, I never had a back ache, I was very fit and working full time in a fairly active job. Cut a long story short as it took three months to confirm I had 8 spinal fractures, it then took a further seven months to see a Spinal Surgeon at a large teaching hospital to be told there was nothing that could be done the bones in a spine being too badly damaged (not enough left of 4-5 vertebra). The best thing I could do was to take advice on applying for disability benefits (PIP) & Blue Badge and find out about getting my home adapted plus a referral to physio. Welcome to the world of disability and unemployment!
Since that time I have changed hospitals for my osteoporosis care, this hospital is clear that the fractures I had in October 2017 were rebound fractures. I had one previous fracture in my foot when hit a pot hole and went over the handle bars of my bike, which then landed on my foot I had bruising down the left side of my body but only one small foot bone broken.
After the spinal problem I had a holding injection of denosumab then did two years on Forsteo daily injections; then a 'holding' year on an infusion of Zoledronic acid (Aclasta) and in June 2021 went back on the six monthly denosumab injections, this was a hard choice but it was recommended by two Consultants.
In 2024 the last dexa scan, started to show a more positive bone picture (the scan clearly states it does not include the damaged vertebra) of the scan area only the right hip is in the osteoporosis range other areas are in the osteopenia range. I'm continuing on denosumab for another two years before another scan and review in September 2027.
I do hope you are able to get at least a 'holding' medication that suits you but please do have something as just stopping denosumab is just too high a risk to take with what is now known about this drug.
I have always found the Nurses on the ROS helpline very helpful, talking with them gave me the confidence to change hospitals and feel confident about the drugs I choose having been recommended to go back on to Prolia.
Good Luck
Posy White
PS sorry Boneness I realised I've written a bit of a monologue!
I was started on Prolia last summer, having had a bad fall and MRI showed the onset of cauda equina plus myelopathy. When given the jab was warned by the nurse that I would be on prolia for the rest of my life! I'm 75. . Unfortunately it doesn't do anything for the pain. Am starting with the pain clinic next week. Everything crossed. 🤞
Hello Posy White,
Thank you for detailed response. You did not say why you were put on Denosumab with only mid oestopenia? However, what you have said regarding withdrawal is exactly my concern regarding the rebound issues! It makes me feel I do not want to take the medication of Denosumab even though it does seem to have very good results, which is brilliant. But I am very concerned long term, if I had to stop taking it for any reason, as then I do not know what options are left for me to keep the bone density where it is. I am sorry to hear of your problems with fractures. It is such a difficult decision it would appear, to weigh up the pros and cons. Good luck.
Hello Boneness,
I was in the Ostoporosis range when I started the Denosumab in 2012, it was stopped in 2017 when the scan showed I was no longer in the range to merit the medication. I was diagnosed in 2009 but needed to be post menopause before starting medication. I was limited in choice because of difficulties with my diet and food absorption.
My understanding is you need something when you stop Denosumab, but after that period you could safely take a holiday from medication. At first Denosumab was limited to 5 years, but since then it has been considered safe to take it for much longer periods.
Some people are able to maintain a good level of bone strength by exercise and diet. I was considered at risk in my 30s and was monitored with blood test and scans every 3-5 years. I managed without Ostoporosis medication (other than calcium and vitamins especial D) for a further twenty years. However at some stage I was bound to end in the Ostoporosis range between family history and limited food absorption, just please I managed for so long!
As you say it is such a difficult decision and just not simple. Good luck.
Posy White
Advice please - joint pain following Denosumab/Prolia injection 
Prolia / Denosumab Opinions
