I have been advised to start on a year’s worth of Evenity / Romosozumab (has to be authorized by Insurance first, so may be a non starter) & wondering how others have fared on it & if so how much success you’ve had in building bone? It involves 2injections per month & wondered if anyone had side effects from them?
I know it wasn’t available in UK a few years ago - has that changed?
Hello. I started Romosozumab in August 2024. Was unable to tolerate oral treatment and this was recommended by my Consultant. I am in the UK. The injections are easy to do. I have had a few side effects but they don't seem to last long and not all at once. I seem to have formed a repeating pattern through each month. For example, headache once or twice a month, slight nausea, some bone pain but nothing major like the pain with fractures. I have never been good on any medication so this might just be me and others might be very different. I have seen some other members of this forum who have completed their treatment who have had really good outcome from this treatment. I make sure that I drink plenty of water prior and after the injections, take some paracetamol after as well and maybe before I go to bed and that's it. I don't take any other pain relief. It is a difficult decision to make on what treatment you should take and potential side effects. For me I felt I had run out of options and thought if there was even a small chance that I could prevent future fractures then I would give it a go. I am certainly more active now than I was at the start of treatment. This might just be a coincidence but what it does show is that it is not making me feel worse which I did find with Alendronic Acid. I hope this helps a little and wish you the very best of luck with whatever you decide.
Thank you for the advice. I too seem to react to most medications so we'll see how I do on this..
Took it for a year. Had no effect. No side effects. No change in DEXA readings before vs after.
So sorry to hear that. What now for you?
Relying on supplements and exercise. I have to be careful what I say here... Don't want to say anything which might discourage people and have my comment deleted!
Don't forget you can search the forum too...
Thank you -I will do that too
Hi Hampshirite
The consultant who did my DEXA report has also recommended anabolic treatment (romosozumab) but my insurance won't cover it because osteoporosis is a 'progressive condition'. I'm currently trying to find out a) if my GP can refer me out of area because our NHS waiting lists for treatment are colossal and b) how much it would cost to pay for. If you succeed in getting yours through insurance I'd be interested to know (suitably anonymised of course!)
Wishing you all the very best with your treatment however it arrives.
I'm in US & waiting for a prior authorization from my Insurance with no guarantee that it will be covered.. Good luck with your pursuit too!
I am on my last month of evenity . No side effects. But a scan might not be possible due to waiting lists. I then start Denosub 6monthly injections. I know nothing about Denosub. Hope all goes well for you.
From what I’ve read, it effective BUT when you stop, bone loss oils immediate and severe
Thank you. Not sure why you have to start on Prolia so soon after finishing Evenity? It was suggested to me to have a blood test to measure C-Terminal telopeptide (CTX) levels (biomarker for bone turnover - the higher the level the greater the resorption & in osteoporosis the bone loss/resorption is greater than the rebuilding. Apparently C-telopeptide levels decrease within a few weeks when osteoporosis is being treated successfully with medication rather than waiting for a scan to measure it...)
I had also read about it in Dr Keith McCormick's book 'Great Bones, Taking Control of Your Osteoporosis') & he had mentioned that, so I have had 2 tests over a couple of years & my levels have increased. (Haven't been on any meds). If I am able to start on Evenity I will get this blood test after the year (plus a scan) to see the results ..
it is available in the UK. My consultant would have prescribed this for me but not licensed for men! Very annoying.
I was on it for a year and it built bone My Dexa scores improved Fought like hell with my insurance company but finally got them to approve Worth it!!!
Great to hear, thank you.
I had Evenity on the NHS. No need to pay or go through insurance, my NHS consultant recommended it. I had great results, no side effects and a significant improvement in bone density.
I finished a year of Evenity this past October … my follow up Dexa indicated improvement in my lumbar spine from -4.3 to -3.0
I am following up with weekly Fosamax … I was hesitant to get the longer term injections after Evenity
I had weight gain while on Evenity ( don’t know if it was related), particularly abdominal fat gain
I had one episode of sharp mid thoracic pain , which resolved
Evenity
Take nothing after Evenity
Anyone taking evenity?
REMs. Faulty.
Bone idle
