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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This resonates so much. I have gone for second and third opinions, incl Two endocrinologists, general practioner, OB and orthopedist. I put off any treatments for several years and tried a holistic route to no avail. Ive spent 6 months educated myself and am now at the point where I will go for Evenity, build up my foundation and then will hopefully follow up with holistic remedies. My last stop is I will be speaking with Dr McCormick in Oct. If he advises me differently, I may alter my decision.
It is a very difficult decision, one which I have agonized over since February. I feel very strong and vibrant. The thought of taking meds with such dire side effects feels like opening Pandora’s box. I am also very leery of tradional doctors who are at the whim of big pharma. That said, doing nothing feels a bit reckless at this point. I’d recommend you take the time and research everything and come up with your personal decision that feels right for you. I don’t think anybody really understands this disease completely and I believe it’s a personal decision that you must make when you feel fully informed and ready. Please follow up and let us know what you decide. I am scheduled to start Evenity on oct 20.

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@ppat4pr

I would not feel at all comfortable with the doctor who showed you how easy it is. I think they get paid, or otherwise rewarded, for pushing some medications. Really hope I am mistaken.

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I have had those same thoughts but tell myself I am just being paranoid and to let it go. But I know that pharmaceutical sales people can be very persuasive and the pharmaceutical companies make fifteen billion dollars a year on osteoporosis drugs. We are their targets….an older sometimes vulnerable population who just want to live longer and better. I am 76 and have avoided drugs since a really bad reaction from Boniva. But since my last scan revealed a -3.4 in my lower spine, I have an appointment with an endocrinologist and will go in with an open mind and the hope that he has good advice.

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I, too, am struggling with making a decision about treatment for my osteoporosis. My new PCP is
pushing the Prolia shots. I’m resisting. I’ve been walking more and being mindful of my diet. My t-score in my spine improved. Slightly worse in my right hip. My mom, who was an RN always lived by the adage: ‘the best medicine is no medicine’. My doctor says I’m a prime candidate for fracture. I just left my previous doctor because she was so passive about my concerns, and wouldn’t support me in a non-medical approach. I share your frustration. Everyone is into pushing the drugs. I’m thinking about seeing an expert here in Florida with Mayo. Anyone have good experience with this? I’m trying to do what’s right for me. Thanks for your input. I really appreciate the advice and support.

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@cloud60

How do you take collagen ? What brand?

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I take one scoop of Vital Proteins and alternate with a scoop of Ancient Nutrition collagen. The latter is not just beef bovine.

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@ppat4pr

I would not feel at all comfortable with the doctor who showed you how easy it is. I think they get paid, or otherwise rewarded, for pushing some medications. Really hope I am mistaken.

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I would ask any provider if they have any affiliation or receive compensation from any pharmaceutical company.

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@ibis3

I, too, am struggling with making a decision about treatment for my osteoporosis. My new PCP is
pushing the Prolia shots. I’m resisting. I’ve been walking more and being mindful of my diet. My t-score in my spine improved. Slightly worse in my right hip. My mom, who was an RN always lived by the adage: ‘the best medicine is no medicine’. My doctor says I’m a prime candidate for fracture. I just left my previous doctor because she was so passive about my concerns, and wouldn’t support me in a non-medical approach. I share your frustration. Everyone is into pushing the drugs. I’m thinking about seeing an expert here in Florida with Mayo. Anyone have good experience with this? I’m trying to do what’s right for me. Thanks for your input. I really appreciate the advice and support.

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I share your concerns also, but the bottom line is none of us want a fracture anywhere. I am a retired RN and unfortunately have expensive horrible Health Insurance since retiring. I would have gone to see an expert at the Mayo Clinic ( I live in South Florida) but I would have had to pay out of pocket because they are not on my plan( the cost would have been extremely expensive) Everyone has a different journey when it comes to taking medication. I am a rare one that no ( 4 total) medications have ever worked for me. My latest MD has encouraged me to be very careful, take supplements, eat healthy, and continue to do my daily exercises. She did persuade me to take Fosimax because she is worried about a compression fracture in my spine. The best way to make any decision is to Educate yourself as much as possible and to feel comfortable with your decision.

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@pedsnurse61

I share your concerns also, but the bottom line is none of us want a fracture anywhere. I am a retired RN and unfortunately have expensive horrible Health Insurance since retiring. I would have gone to see an expert at the Mayo Clinic ( I live in South Florida) but I would have had to pay out of pocket because they are not on my plan( the cost would have been extremely expensive) Everyone has a different journey when it comes to taking medication. I am a rare one that no ( 4 total) medications have ever worked for me. My latest MD has encouraged me to be very careful, take supplements, eat healthy, and continue to do my daily exercises. She did persuade me to take Fosimax because she is worried about a compression fracture in my spine. The best way to make any decision is to Educate yourself as much as possible and to feel comfortable with your decision.

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Thanks pedsnurse61 for your reply. Actually I would have to pay for a Mayo doc out of my pocket. So I’m rethinking that. My present doctor says I need treatment. But I have been reluctant to start the shots because it’s a test of my life fix.
I was on Boneva and had terrible esophageal pain.
I took Fosamax many years ago. After much reading about possible kidney damage, I stopped it. I’m still searching for the correct option for me.

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In my opinion and various experts too, the problem isn't medications, it is the sequence of medications that MD's are prescribing. Every doc I know (and McCormick's book, Leder's MGH video) ) say bone builders first but insurance requires failing the anti-resorptive in many cases, and docs have to go along.

Neither of my docs, or McCormick, uses Prolia at all if they can help it, due to the risks to bones when stopped and the trickiness of timing getting onto a follow up regimen of Reclast.

It is also interesting that so many docs are prescribing Evenity instead of Tymlos or Forteo.

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@windyshores

In my opinion and various experts too, the problem isn't medications, it is the sequence of medications that MD's are prescribing. Every doc I know (and McCormick's book, Leder's MGH video) ) say bone builders first but insurance requires failing the anti-resorptive in many cases, and docs have to go along.

Neither of my docs, or McCormick, uses Prolia at all if they can help it, due to the risks to bones when stopped and the trickiness of timing getting onto a follow up regimen of Reclast.

It is also interesting that so many docs are prescribing Evenity instead of Tymlos or Forteo.

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They are prescribing probably Evenity rather than Forteo or Tymlos bc these particular patients have previously had radiation.

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@ibis3

I, too, am struggling with making a decision about treatment for my osteoporosis. My new PCP is
pushing the Prolia shots. I’m resisting. I’ve been walking more and being mindful of my diet. My t-score in my spine improved. Slightly worse in my right hip. My mom, who was an RN always lived by the adage: ‘the best medicine is no medicine’. My doctor says I’m a prime candidate for fracture. I just left my previous doctor because she was so passive about my concerns, and wouldn’t support me in a non-medical approach. I share your frustration. Everyone is into pushing the drugs. I’m thinking about seeing an expert here in Florida with Mayo. Anyone have good experience with this? I’m trying to do what’s right for me. Thanks for your input. I really appreciate the advice and support.

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I am also in Florida. I am seeing an osteoporosis "specialist" in Orlando and she is encouraging me to go on osteo meds. Before my bloodwork, and just based on a DXA, she leaned toward Evenity. During the second visit, since my CTX was high, she was leaning towards Prolia. My third visit is in about a month and I am guessing she will continue to suggest Prolia. I am doing whatever I can to avoid prescription drugs because they scare me. (I purchased a Marodyne LiV platform, am eating 6 prunes a day, eating mostly organic and healthy foods, walking daily, strength training 3x/week, avoiding alcohol and limiting caffeine, taking quality supplements and collagen). I am researching bioidential HRT, but I am 16 years post menopause so that may be risky. I plan to ask my osteo doctor about HRT and I am guessing she will say no. I am also in the process of searching for a second opinion since I predict my doctor will disappoint me again during the next visit. I am considering Dr. Bush at Central Carolina Othropedic Associates (who uses Echolight REMS); Mayo Clinic in Jacksonville; a functional medicine doctor locally (if I decide on bioidential HRT).

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