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

Hi Simran, I was diagnosed with osteoporosis last year in October and at 32 I was shocked. My doctor and me believe it came due to my deporevea birth control but they can't 100% confirm. It came to a shock and it came with a lot of feelings. Anger depression being the hardest ones. It doesn't help that anytime I talk to a provider I get " your to you g for this" speech. I know I'm too young for this but this is my life. It took me 6 months to see a specialist and 2 months of testing and reviews to get treatment. I just started my treatment this week and it's been hell to try to get people to take me seriously because of my age. Things I can say have helped me. Find a groups or a therapist so you can vent, having this is exhausting and you need to have someone to talk to. Second, write down how you feel and what hurts, when you go to the doctor there going to ask so many questions and it's hard to remember with so much going on. If you write down things it makes it easier to remember what you wanted to talk about. Last thing I can advise is trust your body, everyone is different and what works for someone else doesn't mean will work for you. I wish you the best in this journey , know your not alone!

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.

Thanks so much, Kay and so sorry you are going through this.

I did a quick scan of studies and it looks like Depo Provera is correlated but a few articles say BD should improve after stopping Depo.
https://pubmed.ncbi.nlm.nih.gov/40372778/
https://pubmed.ncbi.nlm.nih.gov/36699167/
I think what has been hardest is that I look fine so everyone treats me that way while internally I am always a little or a lot anxious about fractures. My PCP and gyno were unhelpful. I am frustrated that the axis I referred to above around depression and anxiety has not come up. I had to do that research on my own. Fortunately, I do have a great therapist.

Oopsie, thank you so much for sharing. I really needed to see this: "I was on HRT before diagnosis so even that didn't help." Of course everyone is different, but I had been diagnosed with osteopenia in my 40s. I had no idea I'd fall off the estrogen cliff in menopause and have kind of been torturing myself with that "what if" around what my T-scores would have looked like if I had gotten on HRT while I was in perimeno.

I have actually started working with an Ayurvedic doctor because the treatments offered by my doctors can only be taken for a few years and potential side effects seemed really awful. I figure I will start here and then see where my scans are in a year. I am going to get Dr. Keith McCormick's book "The Whole-Body Approach to Osteoporosis." Thank you!

Hi!

I was diagnosed with osteoporosis at 50. They said I had the bone density of an old woman:(
I immediately went on alendronate and it reversed some of the osteoporosis and osteopenia in my spine and hip. I'm now 71 and have held it at bay. I've taken 2 courses for about 36 months each of alendronate with few side effects. Depending upon the generic, sometimes I felt a little queasy for a short time but no other side effects. I've been off alendronate for 3 years and still showed improved T-scores as of last year. I exercise regularly, do lots of yoga and recently added weight lifting to my routine. I ultimately went to an endocrinologist who offered me some of the best advice which was to exercise, take a calcium with D supplement and stay off the meds for now. You might want to try the alendronate to see if it improves your T-scores. I do appreciate that the alendronate made significant improvement for me and continues working 3 years later.

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!

@misst1970 thank you so much for taking time to share your story with me/us. I have decided I am going to try to write about the mental health impacts of this for a broader audience so all can benefit and know they are not alone. Thank you again.