Any non fracture members?

@glojo

Me Too! Haven’t taken any Meds. I’m turning 76 this summer.
Once you start you never stop as Bone density reverts after stopping.
Fosamax stays in system for 2 years then they start you up in another.
Not for me, not yet .
Changed diet, added more exercises for OP like hopping, lunges, deep squats , omega 3s help fight OP so I add that. Omega 6’s are BAD and make bones worse.
Dexa scans are faulty and not reliable stats. I did one REMs scan , bone quality not as good as expected.
Never have fractured that I know of.

Hello Everyone. I am new to the OP diagnosis as well. Actually found osteopenia but close to the osteoporosis parameters in my routine DEXA. I must say it threw me for a mental loop as well. I have always been physically active (lived, worked and taught in the exercise world, a retired RN). After a complicated and still bothersome knee replacement 5 years ago which put a huge kibosh on my weight-bearing activities, I wasn’t surprised that the scan showed significant changes. Unfortunately I am facing a 3rd cervical neck surgery secondary to a hard fall (my balance is not good because I cannot engage my quad to lift and pivot well because of the knee). And, yes, I went to many series of PT, did my home programs, etc even aqua therapy. All thru this journey and thru numerous falls, I have never had a fracture. Because of my DEXA scores and upcoming cervical neck surgery, I started Tymlos 2days ago. I certainly don’t want hardware failure with this one…. I read on this forum many who have had experience with titrating the dose upwards gradually and opted to approach my dosage administration that way. I realize two days at a low dose is not a ‘real’ trial but at least I had no hypotension, headache or anaphylaxis! I thank everyone who has posted experiences here…

I am also concerned about weight gain. My smaller frame cannot handle the extra weight load. I already began this after the years of sedentary (for me) life a few pounds over what I should be and have not been at my ideal weight since I turned 50. I am now 73. But looking on the positive side, I keep thinking that God gave me this extra padding to help protect against fractures. I am not, however, relishing looking in the mirror and seeing my profile as wide as it is tall! Hopefully, I can keep my sense of humor and continue to look on the positive side! Blessings to all of you and thank you for ‘listening’…

I'm 62. Was diagnosed with Severe Osteoprosis last year after my DXA showed a T-Score of -4.0. NO FRACTURES. I'm not a high-risk person, and hope to remain that way...kinda perversely happy to have a legit excuse for not doing risky stuff ("come on, let's do the zip-line") I'm not eager to do.

My stupid doc did NOT pull any blood work, but put me on Evenity. I'll be getting my #11 shot next week. Will do a follow up DXA in June with a TBS (Trabecular Bone Score). I had to make about a dozen phone calls to find a place near me that has the TBS capability.

I am interviewing a new doc to see if she will do blood work to get numbers on CTX and P1NP so we can track the progress/lack of progress during this next phase of stabilizers (either Prolia or Reclast).

I have hypothyroidism so am nervous about Prolia as autoimmune issues are a common side effect.

I 100% get the depression and grief stages. I keep trying to put a positive spin on this, but FU*****K is often my thought. Like I didn't need a complicated disease to navigate. I've been angry at our Western medicine lack of freaking knowledge.

On this site, someone turned me on to the book Great Bones by R. Keith McCormick who spelled out important things like bloodwork and the TBS DXA. I feel like I've had to become a doctor to advocate for myself.

Hugs to you.

@debhatchell So very much in agreement with you! I did not get CTX until I requested it after a year on Fosamax. P1NP has never been considered (but I am on bisphosphonates). I feel there are few doctors who are doing a deep dive on osteoporosis (no osteoporosis specialty; it is tacked on to endos, rheumatologists, sometimes gynecologists or PCPs)! Treatment/medical procedures, blood tests and imaging/drugs to take or not/exercise/high impact/low impact/weighted vests/Pilates/personal trainers/physical therapists/supplements/protein powders/collagen the list goes on and on and on. Some docs seem to do some things that others don't. Makes your head spin!

@dorob I'm told that on Tymlos even thos the P1NP may increase dramatically, that you do not begin to actually form meaningful bone until 8 or 9 months. If you are planning cervical neck surgery and are concerned about the hardware, you will possibly want to time it at a favorable period after beginning Tymlos to help ensure your bones will hold the screws and hardware. May I ask if this is a C1-C2 odontoid fracture that is being stabilized? I ask because I fractured those discs and developed a chronic but supposedly stable nonunion state. I think it has become unstable and am contemplating cervical neck surgery. Wondered if you were facing the same procedure?

@willowmena
My bone management NP made mention of “3months” of being on it when they would consider surgery after I started it but the results of the most current ctscan and MRI will be the key. I see the neurosurgeon in 2 weeks to find out his evaluation of the surgical situation. Even if they did surgery right away, I’m sure I will continue the Tymlos and dietary calcium support though I am not osteoporotic yet. I’m counting on my neuro/bone team to make the right call (under my supervision, of course!). I’m hardwared from C3 to C5 from two previous surgeries. This hardware is well healed and intact. I sustained a cervical subluxation below the existing hardware level so they want to stabilize the area. I’m having some increasing neuro symptoms and they want to nip that in the bud.
Thank you for responding to my post. I would love to hear about your journey.

@dorob I herniated all cervical discs when thrown from horseback back in my 30's. Now 77. Despite that fall, I ran marathons, ice skated and lived a very active lifestyle. Then in 2019 my car was T-boned on the driver side (no side airbags), fracturing my cervical C1-C2. It did not heal correctly. Last year, was diagnosed with severe osteoporosis, contributed to by my chronic pancreatitis. Been on Tymlos for just over 8 months and hoping it works for me. It's an uphill battle because I do not absorb my nutrients as I should. I'm planning some neck surgery and need good bone quality to hold the hardware. I'm currently interviewing neurosurgeons for this very specialized surgical procedure. Hoping for the best.