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alendronate and no progress

Osteoporosis & Bone Health | Last Active: Aug 8, 2025 | Replies (71)

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Hello all. I want to give a bit of my medical background before commenting on Alendronate.
I have a primary diagnosis of hypermobile Ehlers Danlos Syndrome (hEDS) ; a connective tissue disorder that affects all body systems. (diagnosed in 2018....Google it if you are interested, and if any of my message here strikes a chord with you). I was diagnosed with Osteoarthritis in 2015, at age 55. After a total hysterectomy with bladder suspension and rectal repair in 2016, my hormones were all in disarray, until I could find a doctor who would honor my request for BioIdentical Hormone Replacement. There was a gap in time where I wasn't getting the Estrogen support needed, which could have contributed to my early (50's is early to me) Arthritis diagnosis. I also have been on Prozac (a Serotonin Reuptake Inhibitor), since post partum depression was diagnosed in 1994. I recently learned that longtime SSRI use can deplete bone density, so I DO wonder if this is part of my equation, as well. I moved from Osteopenia to Osteoporosis in 2021, from results of that years' DexaScan, and my PCP prescribed Alendronate/Fosamax to help stop the progression of bone density.

Two years into the treatment with Alendronate, I fractured 2 metarsal bones in my right foot, while "walking in the water" for exercise. The Podiatrist told me that obviously, Alendronate was not doing the job for me, and we both agreed that loose ligaments or muscles (hEDS) was probably part of the issue as well. He ordered Physical Therapy for me, to help strengthen my foot and toe muscles. I also went to my PCP and told her I was feeling extremely fragile, and wanted to seek further treatment advice. I was referred to a local Endocrinologist, who ordered labs for Thyroid function among other tests. He recommended TYMLOS (an Anabolic) stating that Tymlos has had great results in building new bone strength. I am completing my 12th month of treatment, and will see my Endo next week. He will compare my recent Dexa-Scan with the one from 2024, and determine how much longer I need to take it.
I will post back what I learn at the appointment. I don't know for sure why the Alendronate didn't help me...but I obviously have other issues at play...weak ligaments in my feet, ankles, etc. I continue to do Physical Therapy exercises for my toes, my ankles, PT also for balance and strengthening of upper and lower body muscles around my joints, for my neck and for Temporamandibular dysfunction. I have also done Occupational Therapy for my shoulders and hands (Carpal MetaCarpal bones and my thumbs), when pain or limited functioning are holding me back. I cannot say enough good about Physical and Occupational Therapy. There is so much that can be done with exercises and stretching. It is my 1st "go to" over asking for pain medications, when one of my body parts decides to give me problems. I am also a member of the Ehlers Danlos support group on this platform, and would urge anyone reading this, who finds any similarities in your situation, to google EDS and/or check out the other support group. I was 57 years old when I started connecting the many dots in my health journey, and received a firm diagnosis of hEDS. I have had it and symptoms since I was born.

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Replies to "Hello all. I want to give a bit of my medical background before commenting on Alendronate...."

I'm sorry about your difficulties with EDS. It sounds like you have been through a lot to find good treatment. I appreciate you sharing your experience and stating that PT and OT have helped you out quite a bit. I'm inspired by your efforts.

Thanks for sharing your stories.

May I ask - while you were on Fosamax, were you also taking HRT at the same time? And now, are you taking HRT along with Tymlos?

Tymlos is a great osteoanabolic agent - wishing you the best of success with the therapy! Please keep us updated.