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Bone care choices? (After 2nd atypical femur fracture)
I'm scheduled to start Evenity next Tuesday to come off Prolia. I'm so nervous!
My issues started in my 30's (now 71) when I had a horseback riding accident that left me with a 2nd lombar and right pelvic fracture. Upon seeing my bones thinning near the spinal fracture site, I was put on Fosomax before it was known to take the drug for only a short time. I was on it for decades. Then 13 years ago, 11 months after an orthopedic surgeon told me to stop taking the drug, I had a spontaneous fracture in my right femur that was identified by a doctor to be a side effect of the drug. Since my bones were still showing signs of being osteopenic, I was advised to take Prolia. This was about 8 years ago. I am now recovering from an atypical femur fracture in my left leg that occurred on 11/26/2023. My rheumatologist wants me to come off Prolia immediately and go on Evenity for the transition off Prolia but is not sure about what to do next since Evenity is only recommended for 1 year.
I'm wondering:
What bone care path others have taken after having similar fractures?
Has anyone safely come off the bone drugs? How and was it successful for you?
Lastly, does anyone know where else I can go (literature or doctors) to research information to help me with my future decisions.
Thank you!
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@kristie 2 there are two issues here. One, if the CTX is already low, bisphosphonates won't do much, so McCormick wants me to wait for mine to be higher. This is before treatment.
During treatment, a lower CTX shows the med is working.
Noone should go by my numbers since I am coming off Tymlos (which is no longer working) and have done one set of Evenity injections. So the situation is murky. I just had a new set of CTX and P1NP tests and am waiting for results. My last tests were in July.
If and when I switch to Reclast, my numbers beforehand need to show potential effectiveness (high enough) and then, afterward, actual effectiveness (lower). That is my understanding.
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3 ReactionsI don’t know why I keep doing this but it’s P1NP
P1NP is a bone formation marker.
Yes I know it’s a bone market I just say N1NP instead of P1NP 🤣
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3 ReactionsI hate that you’ve had to go through all of this and I wish you all the best.
Watch this interview w/ Dr McCormick. He provides lots of info you might find helpful.
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1 ReactionThank you for your help. I got his book but this lecture is a concise overview of his knowledge and outlook. I've enjoyed such good health that I've been following most of the advise of my trusted medical providers with limited outside research. My second fracture on 11/26/23 was a wake-up call and I know I need to quickly acquire more information in order to manage my osteoporosis/osteopenia. I am so thankful that I found this Mayo Connect group!
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2 ReactionsJust needing some input from you if you are still on this site. I was put on Prolia after 1 year of Evenity and have been on Prolia for 1 year with no gains. When you failed Prolia what did they put u on?
It is my understanding that gains would take as long as 2 years. I asked about doing a bone density at a year and was told there would be a problem with insurance and that gains would not be seen by that time.
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1 ReactionI had no problem with my insurance doing DEXA after 1 year. If the Md marks it as medically necessary.