Support for the youngsters (diagnosed with stage 4 at 54)

I was diagnosed with severe osteoporosis at 51, despite exercising, eating well, and taking calcium and vitamin D. Genetics play a big role—my mom was diagnosed at 50, has had 16+ fractures, and lost 4 inches of height from compression fractures. I hoped to avoid her experience but found my bones were worse.

The best decision I made was seeing a specialist. Treatments have come a long way, and the order in which you take medications is crucial. Some drugs can only be taken for limited periods, so planning long-term—especially when diagnosed young—is essential.

I waited six months for an appointment with a top osteoporosis clinic founder (worth the wait!). In the meantime, I spoke with a PhD overseeing clinical trials, which helped me prepare questions. The specialist recommended starting with an anabolic bone-building drug before moving to a bisphosphonate to “lock in the gains.” I took Tymlos (daily injection) for 2 years—gaining 16% BMD in my spine the first year and 4% the second—then switched to Reclast (annual infusion). I’ll do 3 Reclast infusions, then take a drug holiday of 3–5 years, with bone marker tests to monitor timing for the next medication.

Other bone-building drugs include Forteo (similar to Tymlos) and Evenity (monthly for up to a year). My mom is on Prolia—great for fracture protection, but stopping it can cause “rebound” bone loss, so I’ll avoid it until I’m older.

I was very nervous at first, but my doctor encouraged me to stay active. I still ski, hike, practice martial arts, swim, whitewater raft, and play with my dogs—and I haven’t fractured. Strength, core stability, and balance training help prevent falls, and the meds add protection.

Most osteoporosis drugs, even if they don’t increase BMD, reduce fracture risk by strengthening the bone structure. Once you have a plan, don’t let osteoporosis define you.

My mom, now 83, is still going strong—she dances, tried rollerblading recently, and exercises regularly. My sister, diagnosed at 49, has held steady with bisphosphonates and no fractures. For all of us, osteoporosis is something we manage, not something that limits us.

Find a specialist, create a treatment plan, stick to it, and keep living life fully. As my doctor said, stopping activity is the worst thing you can do—just let others carry the really heavy stuff!

I have never heard of staging for osteoporosis. Can someone explain Stage 4 and what it means? Thanks you

@misst1970
How did you find the specialist you saw? I’m finding it difficult to get an appointment with any doctors in specialized practices. Each one I’ve contacted is not taking on new patients.

Thank you for sharing your story. It’s heartening to hear a positive story from someone who’s been proactive with taking medication.

@lpalbert27 the first several places I tried also weren’t taking any new patients (and years later, still aren’t!). I kept calling and eventually found one over an hour away with A 7 month wait. I scheduled and also went on their cancellation/wait list. I admit, I called at least three times a week to see if any cancellations and I could move it up. Eventually I got lucky and with a cancellation and was able to move my appointment up by almost four months. Just recently, that doc left and the osteoporosis and bone health clinic closed. I made an appointment with an endocrinologist who specializes in osteoporosis last September for his next available and finally see him in April. There aren’t many out there unfortunately.

I have never heard of staging for osteoporosis. Can someone explain Stage 4 and what it means? Thanks you

I was diagnosed with osteopenia at 53 and osteoporosis at 57. I've been on some kind of treatment for 7 years now and fractured a vertebra at the start of 2024 so was in severe osteoporosis at age 62.

My father went through the same thing in his 50s and 60s but unfortunately never received any treatment as there wasn't much available at the time. He was very frail and stooped by the time he passed away at age 75. I do think my osteoporosis is genetic as I don't have any other risk fractures other than being female and going through menopause. I was on HRT before diagnosis so even that didn't help.

I would recommend finding a good doctor to help you navigate this. An endocrinologist specializing in osteoporosis would be my recommendation.

You might find podcasts and books with Dr. Keith McCormick to be helpful. He is a former Olympic athlete who was diagnosed with severe osteoporosis in his 40s even though he is very fit and healthy. He is 71 now and was able to stabilize his osteoporosis with medication early on but has been off meds for years.

It can be a shock to discover that your bones are not as strong as you thought they were but learning about diet, exercise, medication, and hearing positive stories from people who live with this disease has helped me a lot.

@oopsiedaisy
take a long look at The OsteoCollective on lone and Dr Doug Lucas on You Tube and pocasts