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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@gently

06111945cc, from another site:
"CAL216
Jun 10, 2022 • 12:12 PM
I pay for and order my own bone markers. I find it is more cost effective. If insurance does not cover - and Medicare, I'm finding out, does not cover a lot of tests - it is far more affordable. The cost for a CTX test is around $75.00 when I order and pay for it. If a doctor orders the test, I have found the cost to be at least triple. I use Life Extension and have been extremely satisfied.
Procollagen test cost minimal is in LifeExtension (Intact N-Terminal Propeptide of Type 1 Procollagen (P1NP) Blood Test) with price $99.00."

You might call the lab you usually use to ask about the price. Or Check Private MD.
Has medicare refused payment?
I'm sorry you have this endocrinologist. It is hard enough to fight an illness. We spend all our energy fighting providers and insurance carriers.

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Thank you for sharing. I called LifeExtension and they explained to me how the process works.
I ordered both tests.
The LifeExtension representative said they would mail the order directly to me and I should just take it to LabCorp and have it processed.

My doctor also shared with me that she had another patient who insisted on these tests. She ordered them and Medicare refused to pay for them.

She refused to contact Medicare and say they tests were medically necessary.

I have seven fractured vertebrae right now and a history of other vertebra fractures the last two years.

I really don’t want to go on drugs. But I’m coming to the conclusion that this is something I’ll have to do for the rest of my life. If the drugs can keep me out of pain that would be wonderful.

Have you read anywhere else on the site that patients talk about the drugs working to keep them from pain?

Thank you for helping me.

Blessings,

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@followheart87

I'm in my late 60's and was recently diagnosed with osteoporosis. My doctor recommended Fosamax or Boniva and I chose Boniva since it's once a month. A friend of mine (same age) was also recently diagnosed with osteoporosis and she chose to forgo medication for now and increased her calcium to 1500 mg. My doctor didn't recommend more calcium. I also take Vitamin D and magnesium.

I don't seem to see Boniva mentioned on these threads. Why is that? Why wouldn't a patient start out on the lowest cost oral medication first, rather than jumping into a more expensive injection?

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Boniva (ibandronate) persists in the bone longer than Fosamax (alendronate). While that increases convenience, it has the disadvantage of increasing the possiblity of aytypical femur fracture and osteonecrosis of the jaw. Mind you, some individuals never develop, either. So that doesn't indicate that you are at risk.
Because of their persistence in the bone, bisphosphonates blunt the effect of the anabolic drugs that you eventually need, since medical opinion (now) is that you shouldn't stay on drugs that inhibit bone remodeling for more than five years.
Boniva was taken off the market in 2023, but ibandronate can be found as a generic. I think roche abandoned the drug, for the reason you mention -- it isn't capturing the market. And Roche was unable to hold onto the patent.
Your md may not have recommended more calcium because of the suspicion or controversy over whether it causes athersclerosis. I would worry for your friend because calcium and/or d supplementation can't reverse osteoporosis fast enough to prevent fractures. While some never fracture, vertebral fractures never heal in their original configuration. They alter the structure of you entire spine and worse, can cause unending pain.
Your point though is well taken. And, we often end up taking what our physicians recommend. I've seen a number of endocrinologist and one reumatologist, but never have been offered a prescription for Boniva or ibandronate.
I jumped into the more expensive injection, Forteo, because bisphosphonates are slow. They work by maintaining older bone that can't repair itself. The expensive, inconvenient injectibles build bone more quickly and build a structurally more flexible bone.
Wishing you the best.

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@gently

Boniva (ibandronate) persists in the bone longer than Fosamax (alendronate). While that increases convenience, it has the disadvantage of increasing the possiblity of aytypical femur fracture and osteonecrosis of the jaw. Mind you, some individuals never develop, either. So that doesn't indicate that you are at risk.
Because of their persistence in the bone, bisphosphonates blunt the effect of the anabolic drugs that you eventually need, since medical opinion (now) is that you shouldn't stay on drugs that inhibit bone remodeling for more than five years.
Boniva was taken off the market in 2023, but ibandronate can be found as a generic. I think roche abandoned the drug, for the reason you mention -- it isn't capturing the market. And Roche was unable to hold onto the patent.
Your md may not have recommended more calcium because of the suspicion or controversy over whether it causes athersclerosis. I would worry for your friend because calcium and/or d supplementation can't reverse osteoporosis fast enough to prevent fractures. While some never fracture, vertebral fractures never heal in their original configuration. They alter the structure of you entire spine and worse, can cause unending pain.
Your point though is well taken. And, we often end up taking what our physicians recommend. I've seen a number of endocrinologist and one reumatologist, but never have been offered a prescription for Boniva or ibandronate.
I jumped into the more expensive injection, Forteo, because bisphosphonates are slow. They work by maintaining older bone that can't repair itself. The expensive, inconvenient injectibles build bone more quickly and build a structurally more flexible bone.
Wishing you the best.

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My docs and McCormick all said not to use ibandronate. Reclast is strongest, but otherwise they use alendronate.

@06111945cc I also have many vertebral fractures (7 at last count). I have read that Tymlos (and presumably Forteo, maybe Evenity) help with healing.

I hate to say it but increasing bone density does not, in my experience, help with pain. Osteoporosis is not the cause of our pain, fractures which result from osteoporosis are- if that makes sense. Are you doing PT, massage, tai chi, walking or are you in the acute phase?

@normahorn I told the nurse if there is any pause between shots (and I said I hoped that was possible) and I am having a reaction, I will ask not to do the second shot. They were reassuring.

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I’m no longer in the acute phase.

I’m walking and taking water based PT twice/week.

I’m taking colleges, D3, K2-mk4, K2-mk7, whey protein powder, cysteine and drinking milk for protein.

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Correction: NOT COLLEGES!

Collagen

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Hello, I am seeking some guidance and information concerning osteoporosis medications. I want to know what my options are. My last DEXA scan (November 2022) indicated -2.9 for my spine, and can't measure my hips due to stabilization screws in both hips from falls. Several years ago I did Forteo injections (2 years), then was advised to have Prolia injections. I have been doing Prolia injections since then. My doctor described my DEXA scan/bone health as "stable". Do I settle for stable, and continue Prolia or attempt to improve? I also have spondylolisthesis of L4-L5-S1. I am wanting to discontinue Prolia. My endocrinologist isn't really advising one medication vs. another. She has discussed Evenity, but is my understanding correct, that it isn't a bisphosphonate, and I need to take a bisphosphonate such as Reclast? Thank you for any help!

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'theofficefan55,
Evenity is the same class of drug as Prolia a monoclonal antibody . These two drugs work in opposite ways. Evenity works to build bone, while Prolia supresses bone loss. Prolia suppresses the cells that break bone down. The scary side of Prolia is that when you stop the drug all the precurser bone-breaking cells that have been collecting mature. Rebound vengence on your bones can be quickly devastating.
You don't mention why you want to quit Prolia. Some endocrinologists would advise that you stay on it. My own impulse would be to switch. The excerpt below would have me choosing Evenity.
"The effect of transitioning to [Evenity] romosozumab after [Prolia] denosumab was evaluated in a phase two study of
romosozumab [35]. When administered after denosumab in postmenopausal women with low BMD, romosozumab increased BMD in the lumbar spine by 2.3% and maintained BMD in the hip, although the increase was of a smaller magnitude than that observed in treatment-naïve patients [35]. While the results of this study suggest that romosozumab may offset the rebound increase in bone resorption observed after denosumab discontinuation, more data are needed to determine whether patients will benefit from transitioning from denosumab to romosozumab. https://www.e-enm.org/journal/view.php?doi=10.3803/EnM.2021.1369
I have a bias against drugs the suppress remodeling which is the action of Prolia and the bisphosphonates. So this would be an easy decision for me.
After Evenity another round of Forteo?
Best luck with your decision.

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@followheart87

I'm in my late 60's and was recently diagnosed with osteoporosis. My doctor recommended Fosamax or Boniva and I chose Boniva since it's once a month. A friend of mine (same age) was also recently diagnosed with osteoporosis and she chose to forgo medication for now and increased her calcium to 1500 mg. My doctor didn't recommend more calcium. I also take Vitamin D and magnesium.

I don't seem to see Boniva mentioned on these threads. Why is that? Why wouldn't a patient start out on the lowest cost oral medication first, rather than jumping into a more expensive injection?

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Good evening @followheart87, Welcome to Connect. You asked a question about where you should start out for help with diagnosed osteoporosis. There are considerable options for someone just beginning to protect her/his bones from osteoporosis. If you have been diagnosed with osteoporosis, it is important to know what your Dexa scan revealed. If possible it would be good to have FRAX analysis that will indicate how likely you are to have osteoporosis issues within a 10 year time period. That can help determine the medication choices.
I did start with Boniva because I was already 75 years old and on a borderline osteopenia/osteoporosis margin. Unfortunately, I had serious reactions to Boniva and was transferred into the bone building arena with Tymlos. I had no reactions or side effects for two years of daily injections.
Then it was time to hold down my progress with Prolia. Unfortunately, again, I had serious reactions and was transferred to Alendronate (Fosamax) with the goal of holding everything in place. Fosamax is a once a week tablet. For me that works much better than the medications that are delivered by bi-annual or annual infusions. The half-life of those injections is quite long.
We are all different as you have noticed. Are you seeing an endocrinologist? That may be helpful. There is a also a great book available titled…Great Bones by Keith McCormick who also does consulting.
There are also insurance issues with a long preference for starting with the lower cost medications.
However, it is recommended that you start with one of the bone building options….Forteo, Tymlos or Evenity. After recovering bone stability it will then be time to select a medication like Prolia to hold everything in place, so to speak.
I hope that you have a chance to do some homework on your own. And if she is available, I would like to introduce you to @windyshores who can help you make the best choices.

May you be safe, protected and free of inner and harm.
Chris

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@artscaping

Good morning @peace44. Welcome to Connect. This is a group that believes in sharing experiences as a way to learn more about our conditions and opportunities. I am 81 years old and had borderline osteoporosis. I did not learn anything from my mother about this aging issue. I was 75 when I began to think about my bone issue. I did two years of Tymlos without any side effects. My body seems to handle daily small doses of medication. What I can't handle is larger doses given periodically.

I ran into trouble with Prolia and experienced joint pain and jaw pain. With my PCP's acceptance, I went to Mayo Clinic and met a currently updated endocrinologist who understood my situation. He recommended weekly tablets of Alendronate which has been around a long time. That is working well for me. My body isn't overwhelmed with huge infusions. Reclast is another option. My understanding is that it will support your newly assisted bones. Perhaps @windyshores might have some time to respond to your inquiry. She is considering Reclast after Tymlos and might have helpful information for you.

May you be safe, protected and free of inner and outer harm.
Chris

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I am on Fosomax . I have experienced jaw pain and left femur pain. Now I have to have a tooth extracted and am very concerned about the healing. I am wondering if I should get off of this med that I have been on for 2 years.

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Yes, you should transition to Forteo.
Fosamax is a good drug and has save many a bone. You have symptoms of two of the three of the the scariest adverse effects of bisphosphonates--atypical femur fracture and osteonecrosis of the jaw. You only have symptoms and may not ever have either event. It is so good that you are paying close attention.
Forteo is often prescribed to circumvent and repair damage from both conditions. But, Forteo is also prescribed to build strong bones.
Sometimes you can't delay a tooth extraction. When you have pain for instance, or if it supports a dental appliance. Consider that the jaw pain may be because of the tooth. But if you can delay, it is better to avoid dental work while on bisphosphonates. They do make it more difficult for bone to heal.
Have you looked a dental implants?
Wait, though, for artscaping. He might have a better idea.

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