Bone care choices? (After 2nd atypical femur fracture)

Posted by doglover71 @doglover71, Jan 25 11:30am

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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@doglover71

I was also told that I had failed Prolia and it was suggested that I immediately transition to Fosamax which is what precipitated my first femur fracture. My doctor then recommended Evenity but does not know what would be next. I'm going to get another opinion on treatments too but am forced to start something now because I'm due for the Prolia shot now.

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So incredibly frustrating isn’t it! I look forward to my appointment with endocrinologist’s recommendation. If she appears more knowledgeable and comfortable treating op than my rheumatologist will consider asking her to manage my treatment. Will still need rheumatologist for my autoimmune treatment. It seems that the majority of people who post are being managed by endocrinologist.

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@doglover71

I was also told that I had failed Prolia and it was suggested that I immediately transition to Fosamax which is what precipitated my first femur fracture. My doctor then recommended Evenity but does not know what would be next. I'm going to get another opinion on treatments too but am forced to start something now because I'm due for the Prolia shot now.

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@doglover71 is Evenity a safe follow-up to Prolia in terms of preventing rebound drop in bone density and increase in fracture risk? Is it better to first transition to Reclast? I honestly don't know. This sequence isn't mentioned in any book or video but Evenity is new so maybe they don't know-?

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Unfortunately I didn't know about Reclast until I found this discussion group a couple of days ago so I plan to schedule an appointment with my doctor ASAP to ask all of my new questions including what she knows about Reclast. I'll post what I find out.

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@windyshores

@sallyj2 P1NP measures bone formation activity and CTX measures bone turnover activity 🙂 A rising P1NP is exactly what we want.

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This is interesting my CTX went down a lot but my P1NP went down also by very little . McCormick likes to see a ratio of CTX 10 to 1 ( N1NP). Example he gave was if your CTX is 600 then N1NP would be 60 .

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@kristie2

This is interesting my CTX went down a lot but my P1NP went down also by very little . McCormick likes to see a ratio of CTX 10 to 1 ( N1NP). Example he gave was if your CTX is 600 then N1NP would be 60 .

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Wonder what he would say about Windyshore's and my ratio: Windyshore - 3.4; me 4.2.

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@normahorn

Wonder what he would say about Windyshore's and my ratio: Windyshore - 3.4; me 4.2.

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A little confused. Is this your t score or blood work for CTX & N1NP ratio ?

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@kristie2

A little confused. Is this your t score or blood work for CTX & N1NP ratio ?

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As I said, for our rations.

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@kristie2

This is interesting my CTX went down a lot but my P1NP went down also by very little . McCormick likes to see a ratio of CTX 10 to 1 ( N1NP). Example he gave was if your CTX is 600 then N1NP would be 60 .

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@kristie2 I am confused by your post. Can you provide source or a quote? McCormick wants CTX higher for Reclast to work (but mine is naturally low, in 300's) but the point is to get it down. And PN1P should be higher for anyone on a bone builder.

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@windyshores

@kristie2 I am confused by your post. Can you provide source or a quote? McCormick wants CTX higher for Reclast to work (but mine is naturally low, in 300's) but the point is to get it down. And PN1P should be higher for anyone on a bone builder.

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This info is from McCormick’s video on lab testing from the Osteoporosis & bone health webinar. The higher CTX is more risk for fracture. He likes it 200-375 and maybe 400 . I don’t know about while using Reclast .

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@windyshores

@kristie2 I am confused by your post. Can you provide source or a quote? McCormick wants CTX higher for Reclast to work (but mine is naturally low, in 300's) but the point is to get it down. And PN1P should be higher for anyone on a bone builder.

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He has two talks on that site the other is osteoporosis medication and an integrative approach to treatment .

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