Any non fracture members?

I walk an outside 2 and 2/3 mile trail and have been doing so for at least 5 days a week for 5 years or more. So I was totally shocked when my rheumatologist prescribed Forteo as she made it sound like my osteoporosis was extreme.
I have been injecting my newly protruding belly for a year now and have gained 15 pounds and have rolls around my midsection. I had to buy new clothes in a bigger size and hate it!
I will get a new scan before my appt. next month and don't want to continue but will likely follow the advice of my doctor.
I can't help wondering if doctors get a "kickback" from Lily for prescribing this drug!??!

@janro48

Can you share your dexa scores with us?

@wagsofbevis Research the drugs available before you make your decision. Research a drug's "absolute risk" not the "relative risk" of fracture prevention. For example, "According to the review conducted by the ACP (American College of Physicians), the relative risk reduction of hip fractures with bisphosphonate treatment for at least 3 years is 36%; however, the absolute risk reduction is only 0.6%. Framed as number needed to treat, 167 patients need to be treated for 3 years to prevent one hip fracture."

If Fosamax didn't help you, I wonder whether Reclast would help since it's also a bisphosphonate. From what I've read, bisphosphonates offere minimal benefits as far as fracture prevention. They slow down the loss of bone but also slow down the formation of new bone. Your DEXA may appear better, but you could have older, more brittle bones. I wouldn't want to take Prolia because of the high fracture risk once you stop taking it. It must be followed by a bisphosphonate to lock in your gains.

Here are some articles that may be of interest.


https://www.amjmed.com/article/S0002-9343(24)00101-3/pdf

https://www.consumerreports.org/cro/2012/04/popular-osteoporosis-drugs-come-with-mounting-concerns/index.htm
Check out Brick House Bones on Facebook by Dr Lisa Moore, a PT specializing in osteoporosis. She offers a lot of free exercise videos and other information.

Also, check into information in this support group about high doses of Vitamin K in the forms of MK-4 and MK-7 which have been shown to help osteoporosis when taken with Calcium and Vitamin D.

@wagsofbevis Here is an article about DEXA scans and petite women by Dr. Susan E. Brown, PhD. https://betterbones.com/osteoporosis/bone-density-testing-do-small-boned-women-get-a-fair-shake/

@daisy17,
Thanks so much for this info! I'd seen the Better Bones article, but not the others. I also appreciate the difference in absolute v. relative risk. I will continue to research. : )

Hello @daisy17 and @wagsofbevis,

You may find the following study and article useful when discussing relative vs absolute risk:

"Communicating Absolute Fracture Risk Reduction and the Acceptance of Treatment for Osteoporosis"
- https://pmc.ncbi.nlm.nih.gov/articles/PMC9108104/

This study investigated how patient decisions regarding osteoporosis treatment were affected by being told the relative and absolute risks. And while the article did address that providers sometimes overinflate the benefits and underinflate the risks, the actual risk to the patient still varies greatly based on the individual. The study acknowledges the difficulty in assessing a blanket decision (for or against) treatment and that it ultimately boils down to a risk/reward discussion based on the individual patient and what their individual fracture risk is.

While vitamin K has shown some promise in helping with osteoporosis, there is no one size fits all for each patient and it is best to make those treatment decisions with your provider. Connect can help share questions and ideas for members to discuss with their providers but should not be used to make treatment decisions without provider input.

@kfhoz I did watch the video and everything that they did the shots and the facet joints did not work for me at all.

One problem that some people have along with OP , is weakening kidneys…the diet for OP stresses out the kidneys and many of the meds also do—so far, i have no known fractures and am seeking medical help for achieving a balance that I can maintain before these conditions worsen. Wishing all of you good luck !

I have known I have OP for five years; diagnosed right before covid...and the ball got dropped for numerous reasons. I have never fractured - and like many people at initial diagnosis, I was like, who me, osteoporosis; you have got to be kidding? I have always been active/athletic, eat well, etc. - but yes, my frame is small and am thin. At my first diagnosis I was told to stop running and begin walking - I did, but I had never been more miserable. I just felt tight -and think my back felt more painful - or stiff and rigid. I got a puppy during covid and needed to run around a bit with the little critter; my saving grace! I did not do ballistic running but short sprints here and there in the backyard - and yes, we walked. My back felt so much better after I started moving again. But no fractures, not even when the pup tipped me over when she hit me hard in the legs (from behind ) and I flew in air and landed flat-on my back. I laid there for a moment...maybe a minute or two but got up and felt fine. Maybe I didn't fracture because I didn't see her coming? - so I was relaxed and didn't brace myself.

My dexa showed lumbars as -4.5/-4.6...and L5 is -5! I didn't see that on my initial view; maybe a bit of dylexia...or was it delusion? Hips are -2.6. So while it is possible to avoid fracture - it is still a risk... I believe being fit, or not knowing for a long time I had OP and keeping fit has probably provided me with some prevention despite the risk of fracture. I am wondering if my previous scores would have been worse if I led a more sedentary life? BTW I was diagnosed with OP because I lost height and had reported diffuse back pain after long drives; I had to make long drives (3 hours plus) on a regular basis for work and following I felt uncomfortable - if not downright tight.

I joined the OP group in Mayo to make a decision about treatment. I have seen an MD bone specialist who recommends Tymlos, an Oncologist (had been diagnosed pre-cancer in breast called LCIS right after latest DEXA) who recommends Fosamax, and a PharmD who works with a specialist orthopedic office attached to spine clinic who recommends Evenity. Seems all specializations have their preference based on their specialties desired outcomes - so I asked my PCP is she could refer me to an endocrinologist. She has, and I spoke with that office, and we will be setting up an appointment soon. I am hopeful there might be consensus with someone but moreover I desire a more tailored, and monitored, approach over take this drug for a year and we will complete a DEXA and go from there. At present, I keep active (walk, garden, swim, and do alot of stairs) - and I also enjoy learning from Dr. Lisa Moore of Brickhouse Bones. I began taking Vitamin D (2000 units) as last bloods were a little low - and at that time I was getting ready for surgery to remove LCIS (prophylactic bilateral mastectomy) and it seemed reasonable to help boost the immune system before a major surgery. I eat a mediterranean diet (always have)- and now ensure I eat a lot of dairy to get my recommended calcium level. I do six prunes a day - three in the morning and three as dinner desert. I was referred to PT by my bone specialist to make certain I did not do, what I was not supposed to do, when gardening or lifting - and to strengthen my core.

I did consider trying to manage OP naturally - but to a certain degree I have done this for the past five years (from first diagnosis to this year) - while my condition has not worsened ...it hasn't improved. The "any non-fracture members" was intriguing to me since those of us who haven't fractured must be doing something right; and there will always be a question in my mind about OP and whether we need to boost our bones; our elders didn't...fractures, and even death following fractures. was just part of growing old and aging. Is risk of fracture mitigated by risk from treatment/medicines? I don't know...still deciding.

But I think I want meds for quick gains so that I don't have to have to think about risk of fracture as much. PLUS I am 64, not retired with good private insurance, and since no one knows what US medicare will look like in the future, it seems financially prudent to begin a pharma treatment path sooner rather than later. So hopefully I will not fracture before I get some gains. I just need to pick a poison... Good luck to all - and may we continue to be fracture free!

anatomary,
thanks for the very best wish.
Oncologist like the bisphosphonates because they guard against bone metastasis after cancer. The pharmD might prefer Evenity for you because it is the fastest gain in bone density, and your lumbar numbers are so fragile.
As a fellow patient I'd suggest considering Evenity for six months because that is when it is most effective to bone up that lumbar risk. And then a switch to Tymlos which is very effective in the spine and builds the best trabecular bone.
The main problem with these spinal fractures is that they are excruciatingly painful and even with the best care they never heal back to a normal configuration.
But you'll be getting expert advice soon.
Bless your bones.