I have been on Prolia/Denosumab for 6 years, has anyone been on it for many years more than this and if so are there any contraindications?
Hi Rose, I was on Denosumab for 3 years and didn’t suffer any side effects. However I was concerened about the rebound fracture risk if I missed a dose so asked to be weaned off it as I am due a drug holiday anyway after 5 years on Alendronic prior to Denosumab. I’m now having a few doses of Zoledronate and then hopefully a break. I will be interested to see other replies on this as I understand Denosumab is a great drug that can be taken long-term. If and when I have to start meds again I’d not discount it if nothing better comes along in the meantime. Not sure if it improved my bone density as not had a DEXA since stopping but no new fractures (touching wood) which is a win. Has Denosumab improved your bone denisty or anything else?
I have improved a whole point 1.00 over the first 4 years of taking Denosumab. I was prescribed Zoledronate but had heard and read that Denosumab had slightly superior results so pushed for the Denosumab. Seems you can’t be on some of these bisphosphonate type drugs for more than 5 year, but then opinions change.
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That’s fantastic (I’ve never improved by more than 0.5) and a really good advert for long-term use of Denosumab in terms of efficacy. Have you experienced any side effects?
At one stage I had low calcium, so the injection was delayed for 3 months while I increased my calcium input. None of the standard side effects so far, back pain and some joint pain which may well be unrelated. I have some concerns that this drug doesn’t encourage new bone growth but chances of being put on Romosozumab are small I think!
I think Denosumab just prevents bone resorption like the bisphoshonates. Not sure of your age Rose but I think the anabolics are saved for older age and/or more serious fracture risk patients so if Denosumab is working for now then happy days and stick with it.
About to start using Prolia after bad side effects from Romosozumab. Fingers crossed there will be none from this one. I’m lucky, still walking a couple of miles most days, using weights and doing resistance training. Spine improved really well with Biphosphonates for 5 years so feeling hopeful!
I hope the Denosumab works for you, I was wondering what are the bad side effects from Romosozumab? Don’t hear much about these.
Hello Rose,
Apparently I was unlucky, so I was told. Huge lumps at injection site with redness and pain. Dizzy and disorientated, then nauseous and exhausted with insomnia and headaches. Few days later developed visual problems and swollen ankles. Saw my GP who checked me over and said talk to consultant, who told me not to take any more and they would be in touch. Having my first Prolia injection on 9th March, and hoping for a good outcome.
Liz
Hi Liz, that sounds really horrendous. I wish you the best of luck for the Prolia. I hope any side effects are small and manageable I took Strontium Ranelate for a few years and had no side effects, but it does slightly mess up the Dexa score so seems unpopular, also I believe there can be side effects from that for the heart etc. Seems its often the case you don’t get something for nothing!
Sorry to hear you had side effects Liz, that must have been scary. Thanks for sharing. As Rose said we don’t hear much about side effects of these new anabolic meds.
Anyway….I took Prolia for 4 years with no side effects, no decline in bone scores on DEXA and no new fractures which is a good result. I’m how tapering off it with zoledronate. Really hope it works out for you. Keep us updated.
Hi Rose I was on Denosumab injections for 5 years no side affects until end of the fifth year when my immune system deteriorated and I developed pneumonia, medication changed to Zoledronic acid infusion, will be my third one this June, no side effects so far.
Best wishes
Thank you, that is really interesting. Best wishes