Connect
Too many years on osteoporosis meds??
I was diagnosed with osteopenia in 2000 at the age of 50 (had not reached menopause yet) and was put on Fosamax by my endocrinologist. I subsequently took Boniva and Actonel prescribed by another endocrinologist until about 2015 when he stopped all meds due to both improvement and stable scans. Since then my scans have shown slight decline but now I am at -2.3 at the hip and -2.1 at the spine with the biggest change from two years ago being in the spine - it had been -0.9. I have all new doctors due to a move. My new PCP suggested Fosamax again but I have a type of reflux that makes me reluctant to do an oral drug so she referred me to a different doctor to consider injections. This doctor is an oncologist and hematologist (apparently because they can more easily store and manage injectable drugs) and told me that I was on the oral meds for so many years that I CANNOT resume them and that my only option is Prolia. She said that since I am not in the osteoporosis range yet my insurance would probably not cover it but it turns out that they will. In the meantime I read the side effects and have opted to put medication on hold until I get in with a new endocrinologist. I’m also considering OsteoStrong but am concerned because in addition to osteopenia I have artherolisthesis in my lumbar spine. 1) Has anyone else been told they cannot resume the oral drugs? 2) Does anyone else have both osteopenia AND lumbar spine issues as well?
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
Sorry my error. Spine went from -.09 to -1.2 NOT -2.1
So @marlenec is your hip -2.3, spine -1.2?
Back in 2000 docs were treating osteopenia but I think these days, many docs don't.
The bisphosphonates you took are anti-resorptives, which affect bone turnover and therefore, possibly, bone quality. Prolia is also an anti-resorptive. I really don't know the effect on bone quality of 15 years of bisphosphonates followed by Prolia but I would ask.
I honestly don't understand why you would need medications. And I am someone who comes on this forum to encourage medications. Your DEXA's are not that bad but maybe there is a bone quality issue? Have you fractured? Tymlos and Forteo build quality bone (and Evenity though Evenity is also an anti-resorptive, less so than the other two).
If I were you (and I'm not!) I would delay meds as long as possible because the side effects (dental and atypical femur fractures) are more likely the longer you are on anti-resorptives. Check out Keith McCormick's book on the Whole Body Approach to Osteoporosis (though you don't have osteoporosis!). It might be helpful. Good luck!
ps I have a similar condition in my spine, cervical and lumbar as well as fractures.
-
Like -
Helpful -
Hug
4 ReactionsYes hip is -2.1 and spine is -1.2. Never had a fracture and I’ve taken a few really hard and stupid falls - landed right on my derrière a few times! I don’t know about bone quality just that the report says the FRAX risk is 14% for fracture and 3.5% for hip fracture - it’s that last score that seems to be most consistent with the WHO recommendation for medication. In the meantime I also have spondylolisthesis and been told the only real fix is fusion when I am “ready.” But I know that is a dicey surgery in and of itself let alone for someone with low bone density and docs may want to medicate me before I have that procedure if I ever do. I definitely want to defer meds as long as I can. The UCLA endo I’m seeing (have to wait a long time since I’m a new patient) has lots of experience with osteoporosis so I’ll see what he says. In the meantime I’m thinking of trying to find a PT well versed in both back and bone issues so I can at least exercise safely.
Sorry I mean hip is -2.3 down from -2.1 two years ago.
Your spine is barely osteopenia (less than -1.0). I am surprised that surgery is not possible. I guess the bigger question is whether surgery is a good idea!
Is that hip measurement the femur neck? My report states that that score is unreliable to measure change.
I keep a chart of all my DEXA's since 2001. They go up and down randomly even with the same machine. I am not a doc but I would explore the idea that that -0.2 change is not significant or reliable enough to start meds.
I had osteoporosis for 14 years, 5 of them on a cancer med, before finally going on meds. My spine is -4 and spine is terrible too. I did not want to avoid meds but none of them were tolerable and my doc didn't want to do bisphosphonates due to another condition. He also doesn't do Prolia for me. I went to an immunologist to try to get on Forteo and finally got on Tymlos using a reduced dose and ramping up.
For you, I would think bone quality might be a concern after so many years on bisphosphonates but I don't really know. Hope you find a good doc!
ps the biggest help for my spine issues has been tai chi...PT doesn't seem to help but it might for you...
Thanks!
Yes the hip measurement is the femoral neck.
The concept of bone density vs. bone quality is new to me since I have only ever had DEXA scans. Not that I think my bone quality isn’t poor due to all the meds but it has never been assessed and am wondering if that’s something a surgeon would want to do prior to a fusion or an endocrinologist would want to do prior to medication. I am in the process of obtaining all my records from my previous endocrinologist because I have the scan reports but not the details with regard to the meds I was on and for how long for each one. My memory is a bit vague about that and my treatment by him predates the era of patient portals unfortunately.
Every report I get states that changes in femoral neck are unreliable in determining treatment.
@marlenec, you may also be interested in this related discussion:
- What helps improve osteoporosis without medication?: https://connect.mayoclinic.org/discussion/healing-osteoporosis-without-medication/
In addition to the helpful posts from @windyshores, I'd like to bring @sueinmn @betterbones @maryannp55 @pami @artscaping into this discussion to exchange experiences.
I'll just add that my mom has taken Prolia for years without side effects. Everyone is different.
-
Like -
Helpful -
Hug
1 Reaction