Hello, I joined today to get help in deciding what medication to begin

Posted by luluz @luluz, Apr 12 4:43pm

Hello, I need help in deciding what medication to begin taking for osteoporosis. I’ve been prescribed Tymlos and the box warning for bone cancer is very concerning. Prolia was second option but that also has its drawbacks. I would appreciate hearing from people who are taking these medications and if they have experienced any serious side effects.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

@gently I have not seen the idea about using risedronate anywhere and will ask my doctor. Can you share a source? It seems to be a matter of priority: locking in gains from Tymlos is my priority, but in looking ahead I certainly hope to do Tymlos or Forteo again if needed. So in a way I do see these two routes as contradictory. Your idea makes me nervous! Would like to see any studies before I do another 20% Reclast dose.

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There is a graph of the length of time each bisphosphonate remains in the bone. I'm still looking for it.

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@gently

There is a graph of the length of time each bisphosphonate remains in the bone. I'm still looking for it.

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@gently I have read that only Reclast thoroughly coats the bone. This issue is complicated. Your idea is intriguing but I would want to know that risendronate does a good job of "locking in" gains while at the same time I would want to see a study that shows that bone builders are more effective after risendronate vs Reclast. I have not discussed with my doctor because my esophagus issues make risendronate a no but I still fine this idea of lower or shorter effectiveness making anabolics more effective later on, interesting.

Did a doctor propose this or is this your own idea?

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@isabelle7

@windyshores

Does Evenity do the basic same thing as Fosamax? Is it taken after Forteo or Tymlos?

If you had to start fresh and could choose between Forteo and Tymlos, which would you choose?

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@isabelle7 Evenity is a very different drug than Fosamax with a very different mechanism. It is a potent bone builder with anti-resorptive properties in the last month (and Fosamax is an anti-resorptive). Evenity works by inhibiting sclerostin. Fosamax "poisons" osteoclasts that carry out bone turnover.

I chose Tymlos because the dose was adjustable. Years before I had tried Forteo but could not tolerate it. Tymlos worked really well for me.

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@windyshores

@isabelle7 Evenity is a very different drug than Fosamax with a very different mechanism. It is a potent bone builder with anti-resorptive properties in the last month (and Fosamax is an anti-resorptive). Evenity works by inhibiting sclerostin. Fosamax "poisons" osteoclasts that carry out bone turnover.

I chose Tymlos because the dose was adjustable. Years before I had tried Forteo but could not tolerate it. Tymlos worked really well for me.

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@windyshores

Thanks for the info. I remember you saying one was good for adjusting the dose but couldn't remember which one. Thanks for clarifying. It's great that there's an alternative to the Forteo if for some reason it doesn't work for someone. So good to know.

Have you taken Evenity? I'm still a little confused as to when a person would take which drug.

My takeaway is that for my husband's condition (steroid-induced osteoporosis with a -3.4 lumber spine t-score) it would be best to start with Forteo for about two years. Then go on either Fosamax or Reclast. Where I'm confused is - when does Evennity come into the picture? Would it be in addition to say Forteo and Reclast or would it be instead of one of those, and at which time?

I'm sorry for all the questions. Treating osteoporosis is quite confusing and complex especially when doctors don't seem to either know or bother to tell us what's best. They were just going to start him on Fosamax without using something like Forteo or Tymlos. He started on 30 mg prednisone in 5/2023 for PMR, tapered to 12.5 by 2/2024, developed GCA, at 80 mg for a month (with three 1200 mg infusions of prednisilone) in 2/2024 and has tapered to 20 mg using Actemra weekly injections.

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@windyshores

@gently I have read that only Reclast thoroughly coats the bone. This issue is complicated. Your idea is intriguing but I would want to know that risendronate does a good job of "locking in" gains while at the same time I would want to see a study that shows that bone builders are more effective after risendronate vs Reclast. I have not discussed with my doctor because my esophagus issues make risendronate a no but I still fine this idea of lower or shorter effectiveness making anabolics more effective later on, interesting.

Did a doctor propose this or is this your own idea?

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The doctor suggested risidronate as the least durable. Though I can't be sure he approves any plan. I'm sure there is no study. There is the graph I'm still looking for which is probably from before we were born.
There is ibandonrate (boniva) available IV. Not that I'm suggesting.

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@isabelle7

@windyshores

Thanks for the info. I remember you saying one was good for adjusting the dose but couldn't remember which one. Thanks for clarifying. It's great that there's an alternative to the Forteo if for some reason it doesn't work for someone. So good to know.

Have you taken Evenity? I'm still a little confused as to when a person would take which drug.

My takeaway is that for my husband's condition (steroid-induced osteoporosis with a -3.4 lumber spine t-score) it would be best to start with Forteo for about two years. Then go on either Fosamax or Reclast. Where I'm confused is - when does Evennity come into the picture? Would it be in addition to say Forteo and Reclast or would it be instead of one of those, and at which time?

I'm sorry for all the questions. Treating osteoporosis is quite confusing and complex especially when doctors don't seem to either know or bother to tell us what's best. They were just going to start him on Fosamax without using something like Forteo or Tymlos. He started on 30 mg prednisone in 5/2023 for PMR, tapered to 12.5 by 2/2024, developed GCA, at 80 mg for a month (with three 1200 mg infusions of prednisilone) in 2/2024 and has tapered to 20 mg using Actemra weekly injections.

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@isabelle7 we generally do either Tymlos or Forteo, which are similar, OR Evenity though a few have done Evenity after Forteo or Tymlos. There is no data on that as yet. We all do Reclast or Fosamax or other bisphosphonate after these other drugs to "lock in" gains. It seems complicated, I know, but there aren't that many options honestly! The effects of steroids are complicated though and I hope things get better for him.

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@windyshores

@isabelle7 we generally do either Tymlos or Forteo, which are similar, OR Evenity though a few have done Evenity after Forteo or Tymlos. There is no data on that as yet. We all do Reclast or Fosamax or other bisphosphonate after these other drugs to "lock in" gains. It seems complicated, I know, but there aren't that many options honestly! The effects of steroids are complicated though and I hope things get better for him.

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@windyshores

Thank you!! You made something that seemed so complicated simple. I really appreciate your response. Prednisone has been both a miracle and a curse. Without it he might not be here, or he could have become blind or had a number of other horrible things happen to him. So we deal with the nasty side-effects and pray they go away once he’s off it. With osteoporosis it’s not that easy. It doesn’t just resolve once he’s done. As you all well know.

Thank you again. Your wisdom here really helps people.

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@windyshores

@gently is an astute poster 🙂

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We think both of you are WONDERFUL!

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@windyshores

@isabelle7 we generally do either Tymlos or Forteo, which are similar, OR Evenity though a few have done Evenity after Forteo or Tymlos. There is no data on that as yet. We all do Reclast or Fosamax or other bisphosphonate after these other drugs to "lock in" gains. It seems complicated, I know, but there aren't that many options honestly! The effects of steroids are complicated though and I hope things get better for him.

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Great as always Windy shores

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@amillisp

I also have concerns about my teeth haven’t started any drug yet they’re saying tymlos followed my rec last
Concern is that one some of my teeth might need work in in a few years, so do I pull them all now or take my chances with that Onjlater on

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Also haven’t got implant yet, but maybe I shouldn’t get them if after 18 months of 10 I’m gonna be on Reclast will that start to lose my bone loss and jaw and make my implants fall out very concerned

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