Which option to pick???

Posted by seniorhope66 @seniorhope66, Sep 11 1:08pm

So, I saw my doc today. They said, even with exercise/supplements, that won't be enough to improve my bone density/fracture risk in any meaningful way. The meds that were suggested were reclast (which I understand that only prevents further damage but doesn't build back bone) OR Tymlos (which I would take daily for 2 years, not sure what happens after the 2 years). Anyways, anyone have experience with these drugs? Can I avoid them all together with supplements and exercise? Appreciate your comments, thanks.

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Profile picture for jw9 @jw9

I'm staying tuned to this discussion because I'm in the same place. But my trusted rheumatologist seems to have let me down! He named medications and told ME to decide what I wanted to do!?!

I see that women consult with endocrinologists. That was not something I thought about doing. Maybe my rheumatologist is hoping I will see another specialty!

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jw9,
in defense of said trusted rheumatologist, I'd seen a number of endocrinologist's who offered me choices of different osteoporosis medications. I never saw one who made the decision. I'm not happy to hear of doctors who say you have to take this or that one. Your rheumatologist is showing you respect.

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Profile picture for seniorhope66 @seniorhope66

Thanks for your detailed reply. I also have ankylosing spondylitis. Pain is becoming a major factor for me, so, I need take some sort of action to try and make things better. But, recently, I've experienced a downward spiral negative domino effect in my life: loss job, multiple health issues, and spouse dealing with severe illness, etc. I know nothing is guaranteed of course, but the thought of taking a medication, which results in a new negative domino effect/new class of illnesses, makes me shudder. I did get a referral for physical therapy, which I hope will help things. All of this if course costs money, that I don't have. Life is rather bleak these days. Isn't there some drug that actually can "cause" a femur fracture? That sounds completely insane (taking a drug to prevent fractures that may actually cause fractures). Appreciate comments.

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Boniva causes femur fractures.

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Profile picture for gently @gently

jw9,
in defense of said trusted rheumatologist, I'd seen a number of endocrinologist's who offered me choices of different osteoporosis medications. I never saw one who made the decision. I'm not happy to hear of doctors who say you have to take this or that one. Your rheumatologist is showing you respect.

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@gently
Just want to thank you for your very helpful comment. As everyone knows it's not easy running around to find new doctors, specialties, opinions. This is a doctor who has basically been my primary provider because I have ongoing infusions for 10 years. What you suggest about showing respect makes sense.

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I am taking Evenity but only for 6 months because most of the effectiveness is in the first 6 months. I will have a DEXA scan and then take Prolia infusion annually for 3 years

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clowny, I like the idea of taking the first best months of Evenity. but why Prolia (other than that the manufacturer recommends you stay on their medications). Are you afraid of Prolia rebound after the three years.

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Is it safe to take alendronate for osteoporosis concerns?

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Profile picture for holcombellen5 @holcombellen5

Is it safe to take alendronate for osteoporosis concerns?

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Can you say more about you and your Osteoporosis.....dexa scores anf frax. Your age, will you be starting a first Osteoporosis med, is your prescribing physician your regular pcp or an endocrinologist? When you ask is alendronate safe what does that mean to you. Have you had fractures related to Osteoporosis? There is a wealth of experience and information here. You've come to the right place. Looking forward to hearing more.

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i keep posting this story I saw on substack in response to different questions because I am so impressed. It explains why the Liftmor/onero program works -- look for a PT who is trained in it near you, and it may not be that near; i have to go 1.5 hours if i decide to do it - and why all the stuff we all have been doing , the vibration plates, weighted vest, etc, DON'T work. We have to lift a lot of weights and jump. He explains why. We're wasting our time otherwise and more importantly, letting our bones get worse. https://howardluksmd.substack.com/p/osteoporosis-prevention-and-treatment

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Hello, I am starting Onero in October -it's $420 a month (that is the hardest part). They do not accept insurance and I doubt Medicare would pay anyway. I am driving 1.5 hours 2 x week from Georgia to Jacksonville Florida to do it. Dexascan LS 4-5 3.2, RT hip 2.5, LT Hip 2.6 done on 2/2024. I only had dexascan because I decided to try CrossFit. I opted out of meds with MD support because of my nutrition and exercise including weights most of my life. I did supplements Citracel 400 with D, magnesium(was already on) and VIT K mk4-7. I don't believe in massive amounts of supplements. I tried Boron but I think it is giving me headaches so I stopped it today. I did OsteoProFitness as she has based her program on the LiftMOR study. I had a T-8 vertebral fracture 8/26/24 and a khyphoplasty 12/5/24 after trying to lift my 50# dog. It was quite a setback. My strength is now back but I have neuropathy and some chronic pain that I can exercise through and feel better or ignore. So I tried Evenity and Tymlos and had allergic reactions of severe itching and generalized rash. The MD said no more meds. So I am thrilled to start Onero. I am considering putting the journey on Instagram. I will be happy if I do not lose more bone but expect gains. My next MD appointment is in 2/ 2026. Which is too soon to see results I think.

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I had breast cancer 2 years ago and had a DMX; caught very early. I'm 72 and am on Letrozole and my bone density test now shows I have osteopenia. My oncologist is going to start 9/25 giving me zometa infusion. I saw my dentist yesterday and he said I should have no issues as far as my teeth and jaw since I've always taken very good care of my teeth. I do have spondylosis and RA and am concerned about how those things will be affected by the zometa infusions. Any feedback will be appreciated as I'm a bit nervous.

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