Hi. Just joined the community. I was diagnosed late 2024 with dexa scan- lumbar osteoporosis, hip osteopenia. Started on alendronic acid. Muscle aches started 2-3 weeks in but persevered. Stopped med in march 2025 to see if eased and it did. Restarted again after 4 weeks but sore muscles again. Persevered another 2 months but no relief. Started ibandronate August 2025 which I had similar side effects with but again persevered, muscle aches got worse and spread to neck shoulders hips thighs. Stopped med full blood count and inflammatory markers checked. High markers pointed to polymyagia rheumatica Started on prednisolone Dec 2025. Gp decided next step denosumab but could not start as vitD was low at 39 and therefore had to take high supplement to get to over 50. Recently 70 which is relief. However I’m very reluctant to start denosumab. Read good and not so good facts. The fact that you will be more prone to infections including utis worries me. Have history of recurrent utis and they have been awful with many different antibiotics to clear the problem, so perhaps you can understand why I’m fearful of the denosunab. I feel a bit exposed now to deteriorating bone damage as the pred will not help me in that area. Can anyone enlighten me about denosumab and their experiences with it or other similar treatment. Much appreciated.
Hi Easeldoesit
Yes I have been on Denosumab for 6 years and I have not had a fracture in this time. I have had no side effects from my 6 monthly injections, Was on Anadronic Acid but this did not work, and after 4 years had 3 vertabra fractures in my spine, I have lost 4 inches in height and walk with a stoop.
I hope this will give you some faith in this drug and give it a change to work.
Slightly different, but I have been on low dose antibiotics for eye problems for 6 years and likely to be on them for life. I have focused on gut health and have never had a problem. I make my own kefir so that I have a high level of good bacteria and of course the calcium for my bones. Hope sharing this might help.
Thank you for your reply Shirley. It is good to hear from someone who has been on denosumab for quite a long time without any problems. Very convenient having it only twice a year too. Will be seeing my gp next week to discuss. Thanks again for sharing what you have gone through and I wish you good health for the future. Take care.
I have also been on Denosumab for 6 years with no side effects that I am aware of. However we are all different, no guarantees in the medical world I feel.
Do you have a recipe for kefir please Woofie
KEFIR. Yes. You need to buy the grains, unless you know someone who makes their own, then you can have some of theirs. They constantly grow, so once you get going you have to reduce the amount. I bought mine off Amazon and they were organic. You need the grains, milk, plastic sieve and large glass jar and muslin. Metal equipment damages the grains. If you decide to go forward I will post more info.
Hey Woolfie your recipe for Kefir would be great. Thanks so much
Hi Easledoesit. I have been on Denosumab for three years. I had very frequent UTIs but did not associate them with Denosumab. My G.P. put me on Vagifem 10mg suppositories twice weekly and I haven’t had a UTI since. I haven’t had any fractures in the three years (as far as I know) but I still have a lot of pain from the fracture in my lower spine over three years ago but no more fractures (as far as I know. I have to take Pregablin 100mg twice daily.
I have been on denosumab for nearly 13 yrs, have been well during this period, I did have a fall and break my leg but it healed well, I also had a trapped nerve - but otherwise still very mobile, I have had 2 teeth removed and the dentist referred me to hospital to have them removed as there is a risk Osteonecrosis of the Jaw, (bone damage in the jaw following removal of tooth) I also understand you can develop unusual thigh bone fracture, these are usually side affects after you have been on the drug for a long period, I am not due to see Rheumatologist until 2027 but although the Rheumatologist has said I can stay on it indefinitely I am beginning to feel I should perhaps look at alternative, starting to worry about thigh problem, Rheumatologist just said they would just deal with if thigh did fracture but obviously I’m not happy as it could really effect my mobility, during my time taking Denosumab I have only experienced utis twice, it has definitely been good for me giving me my quality of life and keeping me mobile but I am due for my next injection next month and feel after this I should decide to start alternative, I am high risk of fracture so need alternative, hope that has helped some queries. Best Wishes
Apologies for delay will get the further info for you.