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Nearing end of Evenity treatment
End of this month is my last Evenity set of injections. I had bone density last month, Dr messages me and said minor improvements in most areas, but some a little worse. Will discuss at next appt. I know it is recommended for ‘maintenance’ after this, but I’m concerned at what the dr may tell me. I know the past DEXA have shown pretty bad in my hips ( femoral neck- both sides) I think that’s where the problem still is. I already, and have for years, taken supps, and I am fairly active. Will be back in gym soon.
Any suggestions to help improve?
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Hi @mayblin - I'm progressing in the spine with Prolia after Evenity but just holding on in the femoral neck area and hip. Attached shows my progress up to my last DXA in December.
As for the Prolia exit plan, I'm not too sure. If the new AGA2118 drug does as well as I think it's going to do, and it gets approved in the next 5 years, perhaps that could be an offramp from Prolia without losing bone density. But until it passes and has some real world testing done, I will wait out on Prolia until I reach about ~1.7 in the femoral neck, which might not even be possible.
There seems to be a lot of activity happening on doctors trying to figure out the best way off Prolia and my guess it will be a combination of early Reclast plus Evenity. Trails happening now.
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4 Reactions@margaretisabel No particular reason. I didn’t have any side effects from it. I guess it was partly the cost and partly not wanting to be on so many supplements. I get tired of taking a lot of supplements every day.
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1 Reaction@michaellavacot How did you survive 12 months of Evinity????? I just started 6 weeks ago and I’m so sick and it has made every day sicker than the last. I cry in discomfort daily!
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1 Reaction@michaellavacot, thank you very much for sharing your progress; it's great to see that your L-spine and total hip/femoral neck BMD gains on Prolia are tracking very similarly to what's seen in the FRAME extension trial. Many members here finishing Evenity facing Prolia vs. Reclast decision, and seeing real-world outcomes like yours provides some much needed perspective.
With the harder-to-move hip/femoral neck area, hope AGA2118 targeting dual pathways might overcome the BMD ceiling that single-agent anabolics haven't been able to breach.
Please keep everyone updated if you come across any novel approaches that work better for transitioning off long-term Prolia. Thanks!
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1 Reaction@jmc50 - Oh no! Not a typical response to Evenity. Could it be caused by something else? Maybe a coincidence on the timing of the injection?
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1 Reaction@jmc50 I think something is wrong and you need to talk to dr if you haven’t already
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2 Reactions@jmc50 - After reading some of your other comments, it sounds like you are prepping for spine surgery. I know spine surgeons will use Evenity before spine surgery to help get better results. Perhaps Evenity is working but also causing some nerve pain in the process. Like @szark55 said, talk to your doctor if you have not already.
@michaellavacot
I am in the process of getting a new rheumatologist. I just finished injection 9 of Evenity and new doc recommended going to Prolia. I was concerned about the exit plan from Prolia. She said after 1-2 years they would switch to a Reclast or Fosomax (probably Reclast since I tend to have gastro issues and it's easier). She said as long as there is an exit plan it is safe to come off.
@michaellavacot I am prepping for spine surgery. I’ve spoke to 2 doctors about my side affects and they told me to hang in.
@szark55 I spoke to 2 doctors.