What to take for osteoporosis

Posted by flowergal @flowergal, Sep 25 6:20pm

On Letrozole. Dexa scan shows back to osteoporosis in my spine, other areas still osteopenia.

Oncologist wants me to go on something. I have read many of these posts and am scared about more repercussions from another drug.

Years ago (before BC) I was on fosomax. I think it gave me gerd. What is the lesser evil here ? I'm 69, trying to stay active and capable of watching my grandkids.

I do take Vitamin D and have for years. Generally 5000 units. (Now with k- know better do better)

Any guidance is appreciated.

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

@creisch711

I am at a loss as to what to do next....I initially reacted poorly to Fosamax including swallowing problems and MD stopped it right away, then I moved to Reclast and 2 year scan showed significant bone loss, I then moved to Prolia and failed. Then moved to Evenity which I just completed in October the bone clinic in my health system is recommending Reclast next. I am struggling to get them to schedule a DEXA post Evenity even though it is recommended and my prior year DEXA interpretation recommends followup scan in one year.
I don't know if Evenity worked and I have serious concerns with starting a drug I already failed. On my last DEXA I was at -4.8. I already have 6 spinal fusions from T9 to L2 with stable fractures in T9, T8 and T7 that occurred post spinal fusion surgery.
Any ideas or anyone like me that has navigated this issue?

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@creisch711 it seems like the sequence of meds has been a little backwards for you. A friend of mine went from -4.1 to -2.5 on Evenity though she had not done other meds beforehand. In your situation , with a previous DEXA of -4.8, I would think a DEXA should be authorized or if not (I don't why not) you could pay out of pocket. People here say it isn't that expensive.

Reclast is used to "lock in" gains and perhaps it would work that way for you even if it does not build bone effectively. I don't know- something a doctor could look into. Is there a reason for rapid bone loss that could account for the bone loss exceeding bone density gain on Reclast?

I am not sure about Tymlos after Evenity but another thing to ask about. I did Tymlos, then Evenity (part course) then Reclast and hope to go back to an anabolic.

I have 7 spinal fractures so can relate to you! Get that DEXA and let us know!

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Hmmm. Are we all taking Letrozole, which is the cause of this bone damage? Perhaps we should quit that. Seems to me these other bone problems which are affecting us so strongly now, far outweigh the possibilities of a cancer recurrence down the road. One must primarily live for today, I think. I decided to take only 3 Letrozole pills a week. I saw research which said it was just as effective in the smaller dose. I simply can’t make myself walk right into full blown osteoporosis . That’s some terrible stuff! Dear dear. Always these decisions. Good luck on your journey.

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According to Dr. Keith McCormick you need more than just the DEXA scan to decide upon the treatment, Trabecular Bone Score and blood tests to see if you are losing or building bone,
He says you are the boss and should ask Here’s a link to listen to him explain why
https://podcasts.apple.com/us/podcast/critically-speaking/id1463016517?i=1000676606414

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@tmarkow

According to Dr. Keith McCormick you need more than just the DEXA scan to decide upon the treatment, Trabecular Bone Score and blood tests to see if you are losing or building bone,
He says you are the boss and should ask Here’s a link to listen to him explain why
https://podcasts.apple.com/us/podcast/critically-speaking/id1463016517?i=1000676606414

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McCormick told me not to bother with TBS. The situation is obvious 🙂 I am glad he is suggesting it for others!!

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I’m about to take my Prolia shot. My doctor said it’s the best one. Thoughts?

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elizabeth1, your doctor may be correct. Knowing your health history might give them the best knowlege of what medication would work best for you.
Prolia is one of the most convenient an injection every six months.
It works in a way that is different than any of the other interventions. Prolia halts the body's normal process of bone acquisition. We have cells that break down the bone and cells that lay down fresh bone. Prolia is very effective at stopping the breakdown of bone, consequently you won't lay down any new bone. The increase in bone density will come from the collection of older fissured bone. This non-active bone less blood supply. While you are on Prolia for two years your fracture risk will be lower.
Unlike bisphosphonates the cells that break down bone are halted in the last stage of development. When you stop Prolia they will develope and be released with a vengeance on your bone. It is most common to take a bisphosphonate immediately following Prolia to try and cause those cell to die. The most effective of those bisphosphonates is Reclast. There are many articles and much discussion about how to stop Prolia safely.
There was a study indicating that taking Prolia with Forteo gives a better gain than either drug alone.
It isn't a popular option because it is difficult to get insurance coverage for two expensive medications.
You might want to use the search box for Prolia side effects.
In my opinion Tymlos and Forteo are safer pharmaceuticals that enhance the normal processes to build new vascularized bone.
I withhold a little panic I feel when anyone chooses Prolia. Wishing you the best luck.

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@gently

elizabeth1, your doctor may be correct. Knowing your health history might give them the best knowlege of what medication would work best for you.
Prolia is one of the most convenient an injection every six months.
It works in a way that is different than any of the other interventions. Prolia halts the body's normal process of bone acquisition. We have cells that break down the bone and cells that lay down fresh bone. Prolia is very effective at stopping the breakdown of bone, consequently you won't lay down any new bone. The increase in bone density will come from the collection of older fissured bone. This non-active bone less blood supply. While you are on Prolia for two years your fracture risk will be lower.
Unlike bisphosphonates the cells that break down bone are halted in the last stage of development. When you stop Prolia they will develope and be released with a vengeance on your bone. It is most common to take a bisphosphonate immediately following Prolia to try and cause those cell to die. The most effective of those bisphosphonates is Reclast. There are many articles and much discussion about how to stop Prolia safely.
There was a study indicating that taking Prolia with Forteo gives a better gain than either drug alone.
It isn't a popular option because it is difficult to get insurance coverage for two expensive medications.
You might want to use the search box for Prolia side effects.
In my opinion Tymlos and Forteo are safer pharmaceuticals that enhance the normal processes to build new vascularized bone.
I withhold a little panic I feel when anyone chooses Prolia. Wishing you the best luck.

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@elizabeth1 I think @gently has shown admirable balance and restraint 🙂

Keith McCormick's book "Great Bones" explains the dramatic rebound effect when Prolia is stopped ( loss of bone density, increase in fracture risk) as well as the details of getting onto Reclast afterwards.

Dr. Ben Leder mentions doing Forteo for 2 years and intersecting with Prolila after 6 or 9 months (sorry I can't remember) then staying on Prolia past the end of Forteo and then Reclast.

My

If your bone scores aren't too bad Prolia might be a great choice. Also if you are in your 80's because you might not have to stop! The only other thing my doctor and the above resources say is that Prolia may reduce the effectiveness of bone building drugs like Tymlos, Forteo or Evenity.

My own endo doesn't use Prolia unless there are no other options. Every provider is different.

I hope you have an endocrinologist you trust who may have very good reason to be prescribing Prolia. Ultimately of course it is up to us to decide but it helps to have a doctor you can converse with.

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If you are already immunocompromised, Prolia might not be advisable as it may lower immunity. Not something to be desired when immunity is already shaky.

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@windyshores

@elizabeth1 I think @gently has shown admirable balance and restraint 🙂

Keith McCormick's book "Great Bones" explains the dramatic rebound effect when Prolia is stopped ( loss of bone density, increase in fracture risk) as well as the details of getting onto Reclast afterwards.

Dr. Ben Leder mentions doing Forteo for 2 years and intersecting with Prolila after 6 or 9 months (sorry I can't remember) then staying on Prolia past the end of Forteo and then Reclast.

My

If your bone scores aren't too bad Prolia might be a great choice. Also if you are in your 80's because you might not have to stop! The only other thing my doctor and the above resources say is that Prolia may reduce the effectiveness of bone building drugs like Tymlos, Forteo or Evenity.

My own endo doesn't use Prolia unless there are no other options. Every provider is different.

I hope you have an endocrinologist you trust who may have very good reason to be prescribing Prolia. Ultimately of course it is up to us to decide but it helps to have a doctor you can converse with.

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You can listen to Dr. McCormick here

Prolia was a disaster for me
https://podcasts.apple.com/us/podcast/critically-speaking/id1463016517

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After reading all of these comments, I am terrified. I had to come off of Prolia to have a bone graft and still waiting to see if bone graft took. Today is November 19th, 2024 and the last Prolia shot I had was December of 2023. Both my primary doctor and the oral surgeon who is also a medical doctor told me not to take prolia until all implants were in place. What should I do for my bones and are they actually going to crumble? What about osteonecrosis? Should I be concerned about this. I truly am scared.

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