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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@windyshores

I could not tolerate Forteo at all, even a 10% dose done at an immunologist!

McCormick does not suggest TBS testing for me since the results would probably be disheartening 🙂 I have 7 spinal fractures, three from trauma and 4 from an unwise movement.

I did not have any treatments before Tymlos. I was not able to tolerate Fosamax and during my cancer treatment, which affected bones, doc was afraid of Reclast due to my atrial fibrillation. Prolia was never considered for several reasons.

My doc does not monitor CTX and P1NP so I see McCormick for interpretation of those and my PCP orders them. I saw a second opinion doc who does use blood tests and may see her as well. My main endo says an entire conference could cover the debate on using these tests. I like to have a variety of opinions!

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Wow! You certainly have endured a lot! You probably are among the few patients who did tymlos to evenity to reclast. Best wishes and will keep you in my prayers!

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@gently

069111945cc,
original medicare pays for the bone marker tests every three months. And pays for yearly dxa.
Thanks for the question to our resident expert.

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Hi gently,
That is wonderful news

After my endocrinologist told me that the tests weren’t covered, I called Medicare to find out if they were covered.

The Medicare representative told me that the doctor needed to submit some kind of paperwork, which my endocrinologist refused to do.

Do you have any suggestions on how I can resolve this confusion?

Best wishes,
cc

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@ahmeyers

Forgot to ask- any recommendations on calcium/d/magnesium supplements? Every time I settle on one I find criticism on the ratios, amounts etc. I just purchased New Chapter Bone strength (which is criticized for ratios of Magnesium to Calcium). I am also am strongly considering Algae Cal (which my doctor did not approve of but I think she may be misinformed). That too doesn't have the 2:1 calcium magnesium ratio that seems to be the recommended ratio. If a company that does nothing but manufacture bone supplements doesn't use that ratio, surely there's a rationale. I think I should dive into McCormick's book before asking any more questions. I have a feeling I will get a lot of them answered.

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I am also looking into the best calcuim supplement to take and I have researched both your choices of Algae Cal and New Chapter. If you come up with a clear choice I would be interested in your decision. My doctors only want Reclast or Prolia which I’m not taking since I’m 80 and refuse to risk side effects at my age. My mom died at 96 in 2007 and we never even new if she had Osteoporosis, and she never took any drugs.

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I have a Medicare Advantage Plan which has so far covered the CTX and P1NP tests ordered. The first time the P1NP came back quickly but the second time it took weeks. possibly due to some shortage of supplies.

McCormick and some doctors want a baseline for both. They should be done fasting (or at least CTX should be) and at the same time relatively early in the morning.

My understanding is that CTX measures bone turnover and is helpful in assessing anti-resorptives and P1NP measures bone formation and is helpful with anabolics along with the CTX. But I refer folks to McCormick's book "Great Bones" for more explanation. I am still on Tymlos at the recommendation of docs and McCormick, despite my blood tests looking like it is no longer working. It is maintaining me until Evenity on 12/21.

For CTX: https://healthresearchfunding.org/ctx-blood-test-results-meaning/ (randomly chosen source)
"For people who are not taking any medication for their osteoporosis, then a higher than normal level of CTx can indicate that there is a higher risk of bone fractures occurring.

For those who are just starting medication for osteoporosis, then if a 35% minimum drop in CTx numbers is achieved within the first 90 days of therapy, it is an indicator that the drug is working and will likely improve long term expectations. In some individuals, a 55% drop in CTx numbers have been documented. Improvements below 35% may also indicate progress, but require adjustment to the treatment plan.

For people who are already taking osteoporosis medications and have been doing so for some time, the CTx blood test may not be helpful. The exception here is if an oral surgery is being considered. The test can help to determine the risks of side effects that are related to the jaw bone from drugs that may be administered during the procedure."

PiNP https://www.labcorp.com/tests/140850/intact-n-terminal-propeptide-of-type-1-procollagen
"The International Osteoporosis Foundation (IOF) and International Federation of Clinical Chemistry (IFCC) has recommended serum P1NP as bone formation for use in fracture risk prediction and monitoring of osteoporosis treatment.7 The National Bone Health Alliance, working in association with the American Association for Clinical Chemistry, established that the preferred bone formation marker is P1NP in clinical studies of bone turnover.8 The application of P1NP as a biomarker of bone turnover in various clinical applications has been reviewed extensively.9-13 The P1NP assay provides a sensitive tool for assessing increased bone turnover in postmenopausal women.14-19 Unlike bone density measurements, P1NP levels can show appreciable, rapid response to changes in turnover rate, supporting its clinically use for monitoring treatment response and adherence in osteoporotic patients from the onset of treatment initiation.13 P1NP has been applied for monitoring the effect of antiresorptive and anabolic therapy on bone metabolism20-43 and in hormone replacement therapy.31,32,34,44,45 The determination of PINP concentrations has also been used to detect increases in type I collagen turnover in disease states such as renal osteodystrophy,46 primary hyperparathyroidism47 and Paget’s disease of bone.48-51 P1NP determination may be useful in assessing bone metastatic activity in malignancy and in predicting survival.52-54"

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Couple of questions for the assembled about starting Reclast following Evenity... How long after your 12th Evenity injection did you have your first Reclast infusion? What interval did your doc recommend? I have read long lists of (terrifying) "more common" side effects of Reclast, saw that one person reported a long period of double vision (yikes) following the first infusion. What other Reclast side effects have people experienced? Any intel would be much appreciated!

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Wouldn't it be nice for those of us taking BP medicine to be getting benefit for osteoporosis at the same time?
Now to explore this further .

https://www.research.va.gov/currents/0217-7.cfm#:~:text=A%20recent%20study%20by%20a,the%20risk%20of%20osteoporotic%20fractures.

Forget that. The list of side effects (see Mayo Clinic site) is way too long to even consider pursuing further.

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@hfreifeld

Couple of questions for the assembled about starting Reclast following Evenity... How long after your 12th Evenity injection did you have your first Reclast infusion? What interval did your doc recommend? I have read long lists of (terrifying) "more common" side effects of Reclast, saw that one person reported a long period of double vision (yikes) following the first infusion. What other Reclast side effects have people experienced? Any intel would be much appreciated!

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I am interested in hearing about Reclast experiences also. My Dr is recommending two doses, one year apart. He says that after than, I won't need to take any other drugs.

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@koleke

I quit taking fosamax after three years and a minimal amount of bone gain. Currently taking collagen and it's helped me about the same as fosamax in a year. I'm
opting for collagen and weight bearing exercise for now.
Best of luck to you .

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Can you tell me why you stopped taking fosmax please .
I have spinal osteoporosis and am frighted to take prolia .

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I quit taking it because I took it for over 2 years and was concerned about side effects from prolonged use. I also researched and found evidence that it doesn't really help that much. I'm now going to see an actual "bone" doctor next week to see what he has to say. I've been taking collagen for bone building and my dexa scan isn't getting worse. Hope...

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@windyshores

I have a Medicare Advantage Plan which has so far covered the CTX and P1NP tests ordered. The first time the P1NP came back quickly but the second time it took weeks. possibly due to some shortage of supplies.

McCormick and some doctors want a baseline for both. They should be done fasting (or at least CTX should be) and at the same time relatively early in the morning.

My understanding is that CTX measures bone turnover and is helpful in assessing anti-resorptives and P1NP measures bone formation and is helpful with anabolics along with the CTX. But I refer folks to McCormick's book "Great Bones" for more explanation. I am still on Tymlos at the recommendation of docs and McCormick, despite my blood tests looking like it is no longer working. It is maintaining me until Evenity on 12/21.

For CTX: https://healthresearchfunding.org/ctx-blood-test-results-meaning/ (randomly chosen source)
"For people who are not taking any medication for their osteoporosis, then a higher than normal level of CTx can indicate that there is a higher risk of bone fractures occurring.

For those who are just starting medication for osteoporosis, then if a 35% minimum drop in CTx numbers is achieved within the first 90 days of therapy, it is an indicator that the drug is working and will likely improve long term expectations. In some individuals, a 55% drop in CTx numbers have been documented. Improvements below 35% may also indicate progress, but require adjustment to the treatment plan.

For people who are already taking osteoporosis medications and have been doing so for some time, the CTx blood test may not be helpful. The exception here is if an oral surgery is being considered. The test can help to determine the risks of side effects that are related to the jaw bone from drugs that may be administered during the procedure."

PiNP https://www.labcorp.com/tests/140850/intact-n-terminal-propeptide-of-type-1-procollagen
"The International Osteoporosis Foundation (IOF) and International Federation of Clinical Chemistry (IFCC) has recommended serum P1NP as bone formation for use in fracture risk prediction and monitoring of osteoporosis treatment.7 The National Bone Health Alliance, working in association with the American Association for Clinical Chemistry, established that the preferred bone formation marker is P1NP in clinical studies of bone turnover.8 The application of P1NP as a biomarker of bone turnover in various clinical applications has been reviewed extensively.9-13 The P1NP assay provides a sensitive tool for assessing increased bone turnover in postmenopausal women.14-19 Unlike bone density measurements, P1NP levels can show appreciable, rapid response to changes in turnover rate, supporting its clinically use for monitoring treatment response and adherence in osteoporotic patients from the onset of treatment initiation.13 P1NP has been applied for monitoring the effect of antiresorptive and anabolic therapy on bone metabolism20-43 and in hormone replacement therapy.31,32,34,44,45 The determination of PINP concentrations has also been used to detect increases in type I collagen turnover in disease states such as renal osteodystrophy,46 primary hyperparathyroidism47 and Paget’s disease of bone.48-51 P1NP determination may be useful in assessing bone metastatic activity in malignancy and in predicting survival.52-54"

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When I said can you help me, I meant to say, are you aware of any patient assistance programs for Teriparatide?

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