← Return to Tinnitus With Alendronate
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@yds
@loh, I see that you are anxious about being asked to go back on medication. In another Mayo Clinic chat, I wrote the following, in response to a question about what to do when faced with managing osteoporosis. This is based on my own journey, which I hope you find helpful:
"I agree that doing nothing is not an option. I’m not a doctor, but I’d like to share what I’ve learned from my own journey with severe osteoporosis as an older adult (I am 73 years old).
I’ve come to believe that whatever you decide to do should be grounded in science‑based and reliable information about all the options available to you. When I started my osteoporosis journey in 2004, I had no access to good information about the long‑term use of alendronate, and no doctor was really tracking my 12‑year use of this drug (with drug holidays, but still longer than I should have been on it).
In June 2025, my doctor started me on Tymlos. He insisted I stay on the full label dose of 80 mcg, despite my 90‑pound body weight and very small frame. I quickly developed severe heart palpitations, unbearable joint pain, tinnitus, mouth infections (which later led to a tooth resorption that now requires extraction), and significant hair loss. One day, I even lost my ability to walk. After four months, in October, he finally decided I should stop Tymlos—but he still refused to let me taper; I had to stop abruptly. I have since left that doctor and committed to educating myself.
Through my research and listening to experts who have devoted significant amounts of time learning about osteoporosis, I decided I would no longer take osteoporosis drugs, given my specific risk profile and history:
I can’t safely return to bisphosphonates because I used them longer than recommended;
I can’t take Evenity, Duavee, or Evista because they increase cardiovascular risk, and heart disease runs deep in my family;
I refuse to go back to Tymlos or Forteo after my experience;
I can’t take HRT because I’m a breast cancer survivor; and
I can’t take Prolia because there is no clear, safe follow‑on drug after stopping it.
I also learned about REMS scanning and had one done. Despite my very low T‑scores (similar to yours), the REMS showed that my actual 5-year fracture risk for hips (3%) and spine (5-10%) is low, especially for my age. That was a turning point for me.
From there, I changed my diet and filled the gaps with supplements. I discovered ONERO, a science‑based osteoporosis exercise program, and enrolled in a once‑a‑week class. Less than three months after starting ONERO, I can now deadlift a 50‑pound barbell, back squat with a 35‑pound barbell, and row pulling 40 pounds (I can't do overhead lifting with greater than 20 pounds because I tore the rotator cuff on both shoulders). For someone with severe osteoporosis, that has been incredibly empowering.
I also learned about bone turnover markers and found an endocrinologist willing to support me by ordering the necessary blood tests. My CTX is 241 and my P1NP is 35.4, which together suggest a good balance between bone formation and bone resorption for me.
In short: I truly believe you should do something—but that “something” should be based on educating yourself as thoroughly as you can, so you can ask the right questions and make the best‑informed choices for your own body, history, and risks. You deserve a plan that is tailored to you, not just to the average patient."
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@yds this is incredibly helpful, thank you so much! I have been taking collagen peptides, walking (a lot) and lifting small weights. I’ll look into Onero!!