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

0611945cc
Your doctor might be doing the best she can.
Luckily, you know that it isn't good enough.
Try to get an order for bone markers P1NP and CTX before you start Forteo. In three months you should repeat them and you'll have a good idea if Forteo is working for you. Your doctor will likely be reluctant to order them. My sense of her response is that she doesn't know. But she almost certainly knows all kinds of other valuable things about a multitude of diseases. And we have to credit her for prescribing the very best drug for osteoporosis.
I've really been having a great time with this pursuit of the perfect drug, perfect dose and perfect timing. I so enjoy reading the medical literature and chasing little threads as well as combing through the doctors. I tend to share too many obscure (but very exciting) details. And I'm really quiet in person.
So I appreciate your note and am happy to say more if there is anything else you wonder or worry about.
Terry.

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My doctor thinks she knows it all. She says she does not think bone markers P1NP and CTX before you start Forteo is necessary.
She’s an endocrinologist.
She will not send anything to Medicare stating that in her opinion bone markers P1NP and CTX are necessary.
She will order them if I pay for them.
Do you know how much they cost?

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@06111945cc

My doctor thinks she knows it all. She says she does not think bone markers P1NP and CTX before you start Forteo is necessary.
She’s an endocrinologist.
She will not send anything to Medicare stating that in her opinion bone markers P1NP and CTX are necessary.
She will order them if I pay for them.
Do you know how much they cost?

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My doctor uses;

Bone-specific alkaline phosphatase (ALP) – one of the isoenzymes (types) of ALP; it is associated with osteoblast cell function, the type of cell involved in bone formation. It is thought to have a role in bone mineralization; it is recommended that the test be performed at baseline before starting osteoporosis therapy and again 3 to 6 months later; results may be affected by the level of liver ALP.

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Gently wrote:
"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. :

You may be on to something. Maybe we are overmedicated with most of the drugs. I would like to see what dosage and intervals were used in developing the protocols. Is it what they thought would be acceptable to patients? If the dosage were cut in half for Evenity, would we be willing to go to a doctor's office monthly for 2 years? If cut in half for forteo and Tymlos, would patients accept daily injections for 3 to 4 years. Prolia injections quarterly for years? Reclast infusions every 6 months instead of yearly. Or would patients balk?

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@06111945cc

My doctor thinks she knows it all. She says she does not think bone markers P1NP and CTX before you start Forteo is necessary.
She’s an endocrinologist.
She will not send anything to Medicare stating that in her opinion bone markers P1NP and CTX are necessary.
She will order them if I pay for them.
Do you know how much they cost?

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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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@gently

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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I rarely did a full dose of Tymlos and still had huge gains for spine and good gains for hip. I like adjustable meds! I asked about having one shot of Evenity versus two for my first but no go.

My doc did not recommend Evenity after Tymlos but wrote "thank you for your persistence" and agreed. Funny doc, and really works with me.

The 20% Reclast dose is a test dose and after a month I am to tell my doc how I fared and tell him what dose I want next. I read that a half dose is as effective as full dose- can't cite right now- and I am small. McCormick suggested I just keep doing 20% but if I handle it I will try 2mg (40% dose). But after whatever time I do Evenity.

I am not worried about Evenity and the lack of sclerostin short term. I read there were two studies. When compared to placebo, Evenity's risk of cardiovascular events was equal. But when compared to alendronate, Evenity fared worse (not a huge difference) and it was speculated that that was because alendronate had a protective effect. Still, the role of sclerostin does seem potentially important for health.

Evenity becomes more anti-resorptive over the year and is mainly a bone builder for the first 3-6 months (I have been told 3. 4.and 6 months by different professionals. So yeah, thinking about a shorter term course.

I have afib so ironically Reclast is riskier for me than Evenity. I'll post about how I handle Evenity. I am sensitive to everything so if I do okay, it should be reassuring!

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@normahorn

Gently wrote:
"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. :

You may be on to something. Maybe we are overmedicated with most of the drugs. I would like to see what dosage and intervals were used in developing the protocols. Is it what they thought would be acceptable to patients? If the dosage were cut in half for Evenity, would we be willing to go to a doctor's office monthly for 2 years? If cut in half for forteo and Tymlos, would patients accept daily injections for 3 to 4 years. Prolia injections quarterly for years? Reclast infusions every 6 months instead of yearly. Or would patients balk?

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njhornung,
it would be interesting to know. The studies consider patient compliance and economic feasibility. Individualized medicine is time consuming and expensive. I suspect that part of the problem of adverse reactions is in dosage.
The greatest good for the greatest number is a valuable adage. And pure stastatics are valuable. But we each are just one. I, for one would be willing to save my bones by going to the doctors office monthly every year. (But, not for Evenity) I can easily accept self injections daily for 30 years. Injections quarterly for years and years (but not Prolia). Infusions every six months (but I'd rather not Reclast). Would you balk or comply with the greater effort?
But my thought is that a lower dose of Forteo weekly would work better than the full 120mcg, extending the time for which it continues to increase bone density and strengh, requiring fewer injections over many more years.
Some physicians use the bone markers to encourage compliance by showing the patient the positive effect on the bone that we mostly can't feel.

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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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Fortunately my endo had a much better response when I asked what next after Tymlos.

He said he was leaning towards Reclast, though mentioned Prolia might be in the cards. (Evenity was not an option given my medical history.) He specifically asked me to discuss Reclast with my dentist. That was useful both because it will give him background that might affect his recommendation and because it gave me time to take care of any dental procedures that might be questionable with Reclast.

From my own perspective it also gives me plenty of time to learn about the options so I will be in a better position to ask questions and make an informed decision when the time comes. I can also take the potential options into account in selecting my Medicare Part D plan for next year (i.e. check Prolia coverage, but don't worry about Evenity).

I get it that things can change, but to refuse to have even a preliminary discussion would be unacceptable to me.

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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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@gently

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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I was concerned about the increased risk of stroke and heart attack also. Both my rheumatologist and my endocrinologist wanted me to go on Evenity. So, I went to my cardiologist and he ran some tests. No issues. I went to my neurologist and he ordered an mri of my brain and an ultrasound of the carotid arteries. No blockages. So, I embarked on my Evenity journey. I’m halfway done as I just had sixth injections. No side effects.
I do realize that no one knows what the long term side effects might be.

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WindyShores wrote:
"I rarely did a full dose of Tymlos and still had huge gains for spine and good gains for hip. I like adjustable meds! I asked about having one shot of Evenity versus two for my first but no go."

When considering Evenity, I asked one doctor for her opinion mentioning I was being denied half dosage as a trial case. She reminded me that I could always say stop and leave after the injection of the first syringe. I would prefer to be upfront but it is good to be reminded that we have control.

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