1. < Osteoporosis & Bone Health

Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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vgkime | @vgkime | Sep 23, 2023
In reply to @lynn59 "I am in a similar situation. Age 64 and post menopausal for 16 years. I would..." + (show)
@lynn59

I am in a similar situation. Age 64 and post menopausal for 16 years. I would love to start HRT, but my family doctor says it is risky as there is a family history of heart problems. I’m still trying to decide what my 20-25 year plan will be to stop my bones from eroding further. I’m worried diet and exercise will not be enough, and I don’t want to risk lower T-scores so I’m trying to decide my best course of medication action. This is such a daunting decision.

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Read the book "Estrogen Matters" by an MD. The WHI was flawed and your doctor is most likely ignorant of certain facts including heart disease and HRT. Bioidentical Hormones - estradiol as a transdermal patch and progesterone in pill form if you have a uterus. Find threads on HRT on this forum to further educate yourself.

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pedsnurse61 | @pedsnurse61 | Sep 23, 2023
In reply to @ripley "How long have you been on Fosimax and have you had good results with it? How..." + (show)
@ripley

How long have you been on Fosimax and have you had good results with it? How about side effects? My last scan almost 2 years ago showed -3.2 in my lumbar spine and my endo wants to get Prolia injections.

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I have only been on Fosimax for 2 months. I started taking it just after I stopped Evenity which I was on for 5 months. I had to stop due to side effects. I have no side effects from the Fosimax. I would caution you on taking Prolia and encourage you to read " Great Bones" by R Keith McCormick which several people on this site also recommend. He discusses each medication for Osteoporosis and lab tests, supplements needed when having Osteoporosis.

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1 reply
meganstpaulmn | @meganstpaulmn | Sep 23, 2023

At the end of my fifth year of Fosamax I had major fracture of T8 vertebrae in my back (without a trauma). The pain was unbelievable. I had to wear a rigid back brace for several months. I have yet to see an epidemiologist. I feel very confused and anxious. Everyone's comments are helpful. But risks/benefits will be big part of my decision. After experiencing the fracture, I wouldn't wish it on my worst enemy. I'm 72 years old, and in pretty good health.

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1 reply
leeosteo | @leeosteo | Sep 23, 2023
In reply to @kirstenlheld "I just had my follow up phone appointment with Dr. McCormick. At this point, I have..." + (show)
@kirstenlheld

I just had my follow up phone appointment with Dr. McCormick. At this point, I have had all the tests done with my CTX score being in the mid 600s, my estradiol being 9.1, my P1NP result was 63.6, and my Alk Phos was 124 (it has been high since 2017). What he is suggesting now is a four month regimen of Osteostim 4x/day, Reseveratrol Supreme with Quercitin 2x/day, one scoop of Collagen/day, ultra low dose, bioidentical estrogen/progesterone patch, and doing a five day urine ph test to see if I need two additional supplements. We do this for four months, retest everything except the P1NP, and if my CTX score has come down to 300 or so, then we're good. If not, he would then concur with my endocrinologist who recommended that I go on Reclast infusion for a year.

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Hi kirstenlheld, may I ask how old you are?

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1 reply
leeosteo | @leeosteo | Sep 23, 2023
In reply to @lynn59 "I am in a similar situation. Age 64 and post menopausal for 16 years. I would..." + (show)
@lynn59

I am in a similar situation. Age 64 and post menopausal for 16 years. I would love to start HRT, but my family doctor says it is risky as there is a family history of heart problems. I’m still trying to decide what my 20-25 year plan will be to stop my bones from eroding further. I’m worried diet and exercise will not be enough, and I don’t want to risk lower T-scores so I’m trying to decide my best course of medication action. This is such a daunting decision.

Jump to this post

lynn59, I'm in the same position as you. I would love to hear where you end up going with HRT. I'm 66 and 14 yrs past menopause. My gyn is familiar with WHI study and some of it's flaws but is reluctant to prescribe HRT. She feels the risks are higher than the benefit. I also read Estrogen Matters by Dr Bluming. Doesn't change the position of my gyn. Guess I'd have to find another gyn if I want to pursue this.

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1 reply
kirstenlheld | @kirstenlheld | Sep 23, 2023
In reply to @leeosteo "Hi kirstenlheld, may I ask how old you are?" + (show)
@leeosteo

Hi kirstenlheld, may I ask how old you are?

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I'm 56. Officially entered menopause at 54.

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1 reply
lynn59 | @lynn59 | Sep 23, 2023
In reply to @leeosteo "lynn59, I'm in the same position as you. I would love to hear where you end..." + (show)
@leeosteo

lynn59, I'm in the same position as you. I would love to hear where you end up going with HRT. I'm 66 and 14 yrs past menopause. My gyn is familiar with WHI study and some of it's flaws but is reluctant to prescribe HRT. She feels the risks are higher than the benefit. I also read Estrogen Matters by Dr Bluming. Doesn't change the position of my gyn. Guess I'd have to find another gyn if I want to pursue this.

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Yes so far I’ve had two doctors say they would not prescribe HRT for me as it’s too risky from a cardiovascular perspective, especially given my family history. So it’s unlikely I’ll get anyone to prescribe it for me.

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1 reply
leeosteo | @leeosteo | Sep 23, 2023
In reply to @kirstenlheld "I'm 56. Officially entered menopause at 54." + (show)
@kirstenlheld

I'm 56. Officially entered menopause at 54.

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ok, thanks. Your action plan sounds good then. I'm 14 yrs post menopause.

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leeosteo | @leeosteo | Sep 23, 2023
In reply to @lynn59 "Yes so far I’ve had two doctors say they would not prescribe HRT for me as..." + (show)
@lynn59

Yes so far I’ve had two doctors say they would not prescribe HRT for me as it’s too risky from a cardiovascular perspective, especially given my family history. So it’s unlikely I’ll get anyone to prescribe it for me.

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I don't know about you but I asked my gyn "where was I when going through menopause?" Her reply was, we as doctors didn't discuss this with patients because of the WHI study. How disconcerting is that!

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windyshores | @windyshores | Sep 23, 2023
In reply to @meganstpaulmn "At the end of my fifth year of Fosamax I had major fracture of T8 vertebrae..." + (show)
@meganstpaulmn

At the end of my fifth year of Fosamax I had major fracture of T8 vertebrae in my back (without a trauma). The pain was unbelievable. I had to wear a rigid back brace for several months. I have yet to see an epidemiologist. I feel very confused and anxious. Everyone's comments are helpful. But risks/benefits will be big part of my decision. After experiencing the fracture, I wouldn't wish it on my worst enemy. I'm 72 years old, and in pretty good health.

Jump to this post

@meganstpaulmn I have several fractures in my spine and totally agree with you on the pain. I never wore a brace much because I was told muscles would weaken but stayed in bed a lot.

Regarding HRT, as a breast cancer survivor (so far) I would just caution people on that risk. My cancer was driven by estrogen even after menopause.

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