Undecided choice of drugs for Osteoporosis

Posted by peace44 @peace44, Oct 10, 2023

I am 80 years old women and have borderline osteoporosis which affects my entire body. My doctor wants me to take Prolia and the Rheumatologist wants me to take Reclast. I’m unhappy with both choices as the side effects are great and I do not tolerate new drugs well. I am very undecided and am considering doing not taking annty drugs for this condition. I have never had a fracture and I’m very active Any opinions or advice.

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@06111945cc

Gently,

Thank you so much for sharing this.

I’ll be starting my course of Forteo soon.

I asked my doctor what had to be taken when I finished two years of Forteo her response was we usually have this discussion at the end of the two years. Can you imagine!!

I really appreciate the fact that you have taken the time to describe exactly what you decided to do.

Thank you.

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I had a similar situation with the NP at the osteoporosis clinic. I asked what might follow Evenity and her response was that we could discuss AFTER I started the program. I would have accepted being told we would evaluate the situation to make a final determination but the usual protocol is to follow with Reclast or Prolia. I had to push to get that info pointing out I could not give informed consent without being informed.

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It’s things like this that make you suspect you shouldn’t just trust doctors.

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@windyshores

I just read a study on the difference between taking a bone builder before Prolia and bisphosphonates or after. The difference was shocking: in some cases the latter had half the effectiveness. It is much much better to take Eventity, Tymlos or Forteo before a bisphosphonate or Prolia!

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Yes
That’s my dr thinking
Evenity
One year
Then prolia
Then reclast

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@normahorn

I wish there was some way we could bookmark this post for quick future reference.

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The three dots at the end of a post bring up an options to copy a link or bookmark the post.

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@hardingv

The three dots at the end of a post bring up an options to copy a link or bookmark the post.

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Thank you.

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@06111945cc

Gently,

Thank you so much for sharing this.

I’ll be starting my course of Forteo soon.

I asked my doctor what had to be taken when I finished two years of Forteo her response was we usually have this discussion at the end of the two years. Can you imagine!!

I really appreciate the fact that you have taken the time to describe exactly what you decided to do.

Thank you.

Jump to this post

I have not raised the question of what to in 20 months when I finish Tymlos. I know that the gains won't last unless I do something, but studies are always underway and the options might change before that. I hope so anyway, because I have some concerns about the existing ones.

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@imay

I have not raised the question of what to in 20 months when I finish Tymlos. I know that the gains won't last unless I do something, but studies are always underway and the options might change before that. I hope so anyway, because I have some concerns about the existing ones.

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Please share your concerns about the existing protocol after Forteo or Tymlos.

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I have concerns about the side effects of antiresorptive drugs, and with how we equate bone density with strength, but my underlying feeling is treatments for osteoporosis are getting more effective all the time; not long ago, bisphosphates and hormones were our only choices. I just would not want to spend my time or my doctor's time considering or discussing current choices when there may be more options later on. There is evidence that they increase bone density and and reduce fractures and that using them after anabolic drugs maintains bone density. I would prefer to avoid them, even though the incidence of osteonecrosis and atypical femoral fractures is very low. It could be that before I discontinue Tymlos, there will be new protocols for preserving bone mass, including using anabolics intermittently.

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@gently great post. I copied it and emailed it to myself! I was going to do Reclast at a 20% dose and requested IV at the same time, and slow infusion.

However I convinced my doc to let me do Evenity after Tymlos, even if just for a few months. The nurse said the first 3 months is the strongest for bone building.

I would go directly to Reclast since I had wonderful gains on Tymlos in spine and hip but femur neck is still -3.6.

Curious why you don't want to do Evenity after Forto (or Tymlos?).

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Reclast at 20% or Evenity for the first three months for the strongest effect. Clever.
I'm looking at the cardiac risks for Evenity. The black box and the uncertain role of sclerostin.
But you are tempting me with this three months.
One of the really smart docs I've been talking to thinks that the risks were artifically elevated because the drug used in the control arm reduces cardiac risk. And, "A meta-analysis of randomized controlled trials suggested that administration of the sclerostin blocking antibody romosozumab did not significantly increase the risk of major adverse cardiovascular events (risk ratio, 1.14 [95% CI, 0.83-1.57]; P=0.54) or cardiovascular death (risk ratio, 0.92 [95% CI, 0.53-1.59]; P=0.71). Human genetic studies reported variants predisposing to low arterial sclerostin expression were associated with a high risk of cardiovascular events. Overall, past research suggests a cardiovascular protective role of sclerostin but findings have been inconsistent, possibly due to variations in study design, the unique populations and models studied, and the heterogeneous methods used."
https://pubmed.ncbi.nlm.nih.gov/35546488/
I have the idea mainly from the Tower studies that we may be over medicated with Forteo and alternate dosing could open the metabolic window. My real plan is to follow the bone markers. I'll break from Forteo when the balance of osteoblast/osteoclast is compromised in favor of the clasts or just in equilibrium. I think I'll be able to repeat Forteo after a month or two of nothing and then resume and quit based on the markers.
Cardiac disease is the number one cause of death, the one cause most of us will die from. So I'm cautious about Evenity.

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