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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@barboc6612

Wow. That's the best news yet! Thank you! yes, I'm on Medicare 😊

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I am on Medicare Advantage and pay 20% for Evenity. If anyone on regular Medicare gets Evenity for free, is that through a supplement or drug plan?

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@babs10

@contentandwell, if you are still out there, I'm wondering how Tymlos worked for you.

Well, I hope!

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Hi @babs10, I'm sorry to let you know this way, but @contentandwell is no longer with us. She was an active, longtime member of this group as well as the Transplant and Heart groups. She mentored and supported many and is dearly missed.

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@susanfalcon52

barcboc,
I am on Evenity - 12th injections coming up. No problems.
Medicare has paid every penny. I am on traditional Medicare. If your bones are bad enough, Medicare will cover it.

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The difference with Evenity and Medicare is that it is administered in a medical setting. If you take a self-injectable on Medicare, you're sunk.

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@colleenyoung Oh, no. I'm so sorry to hear that. Thank you for letting me know.

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I too can’t decide on my treatment for Osteoporosis. I am 73 years old.
I just crossed over from Osteopenia . I saw my family internist Dr. and she said I should start on Boniva. I take a blood thinner , have a pacemaker, and had my mitral valve repaired.
I went to an endocrinologist recently and she said she would NOT prescribe Boniva but Fosamax was her choice.
I take 600 mg calcium - ocean based. Eat well. Exercise plenty. Some weights.
Never broke a bone. Going in for another dexascan to see if there are any changes in my bone density.
What to do?
Metidith

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@meri8181

I too can’t decide on my treatment for Osteoporosis. I am 73 years old.
I just crossed over from Osteopenia . I saw my family internist Dr. and she said I should start on Boniva. I take a blood thinner , have a pacemaker, and had my mitral valve repaired.
I went to an endocrinologist recently and she said she would NOT prescribe Boniva but Fosamax was her choice.
I take 600 mg calcium - ocean based. Eat well. Exercise plenty. Some weights.
Never broke a bone. Going in for another dexascan to see if there are any changes in my bone density.
What to do?
Metidith

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@meri8181 I’m 70 and just had my second Reclast infusion. I’m not sure what the benefit is of Boniva over Fosamax, both are biphosphonates. I had been in osteopenia for years, finally decided to take a med when I dropped into osteoporosis. My lowest score was -2.9
Within 6 months after the first Reclast I was no longer in osteoporosis. So it’s working! I’m kind of an average person, average exercise, average diet.
I did start with Fosamax (7 weeks) but it bothered my stomach and I had a lesser known side effect, conjunctivitis. I was switched to Reclast. My older sister took Boniva about 20 years ago - stayed on it for 5 years, and has not had an issue. Boniva was not offered to me, but considering my stomach always reacts to meds it could be that the monthly dose was considered too much.
I had my second Reclast infusion yesterday. I may or may not have a third. Evidently it’s usually given 3 years in a row - but I don’t think it’s definite yet whether I will have another.
I am waiting for the onset of the “Reclast flu”. I had that reaction the first time, Starts about 28-30 hours after injection, lasts a day and a half. I’m willing to deal with that in order to reduce chances of spinal fractures.
I believe Boniva is taken once a month, Fosamax is weekly, Reclast is an annual infusion, All are biphosphonates.
Hope you do well on whichever med you decide on!

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I am so sorry to read what you are going through. I myself have been just diagnosed with osteoporosis and will be meeting with my doctor tomorrow to discuss treatment.
I hope you find the right medication for yourself and it works well for you.
Please remember you are not alone and we all care about you here and you are in my prayers.
Love and Blessings,
Jeaneen

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I am a bit of a pragmatist. I am 76 and look at osteoporosis and other similar symptoms of my body aging and eventually dying with a math perspective. What does my family history, my history, lifestyle choices and the actuarial tables mean in this decision making. I don't feel anxious but keenly aware of the end game and how I think I can get the best function in my case.
Question: have you considered getting another opinion from a doc who is not amgen affiliated or asking the first two if and how their amgen connection might be effecting their advice?

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I am 70 and had 3 Reclast infusions over 6 years. The Reclast put me back in osteopenia range, from early osteoporosis. I didn't want to take biphosphonate pills due to side effects, and with the infusion I was just tired for a couple of days. The real risk from osteo is broken bones, and I bike and lot so... I lift weights, take calcium/magnesium citrate (helps absorption). Calcium in vitamins is from the sea in that it is from limestone, which is ocean derived. Vitamin D increases absorption in the GI tract, as does eating the calcium with food.

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For those with early osteoporosis, there are also some "Whole Body Approaches to Osteoporosis" (the title of Keith McCormick's first book. He has since written "Great Bones", an incredible resource).

Osteoporosis is not an event, it is a spectrum, and DEXA's can differ from test to test due to a variety of factors. A change from, say, -2.4 (osteopenia) to -2.6 (osteoporosis) may not be significant.

I had osteoporosis for 16 years before medicating. I could not tolerate Fosamax or Forteo and COVID interfered with my starting Tymlos and I fractured with a kind of extreme, unwise movement (think putting on a bathing suit sitting down).

If you have early osteoporosis, you do have time. Bisphosphonates work by decreasing turnover, so the bone growth is not quality bone. Nevertheless these drugs can be helpful in some cases. It is good to know, though, that they will interfere to some degree with the effectiveness of meds that do build quality bone, if needed later.

Our bone loss continues after menopause (though I had the biggest drop right at menopause) and we need a long term plan. Insurance policies (and PCP prescriptions) need to change so that bone builders like Forteo, Tymlos or Evenity come first.

With early osteoporosis, I am not sure what I would do. Maybe bisphosphonates are enough. For some, natural approaches hold the line. I have seen different opinions on the use of meds in early disease. I am glad people are sharing their successes because it helps others include meds in their decision-making along with holistic approaches.

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