question about being on osteoporosis medication for 25+ years

Posted by shorty321 @shorty321, Feb 19 8:17am

I haven't started any osteoporosis medication yet. I have an appointment next week to start Evenity, but I am still thinking about how my severe osteoporosis will be managed long-term. If I start Evenity when I am about 58, how will I be able to maintain my Evenity bone density gains long-term without having bad side effects using drugs like Reclast/Prolia/Fosamax? It scares me to think about potentially being on those drugs for decades. The alternative would be to take no medications, and watch my T-scores get worse with time. These are my DEXA Scan results from about six months ago:

Lumbar Spine BMD (L1-L4): T-Score: -4.0
Left Hip BMD (Total): T-Score: -3.0
Left Femoral Neck BMD: T-Score: -3.6
Right Hip BMD (Total): T-Score: -2.9
Right Femoral Neck BMD: T-Score: -3.2

Has anyone had experience with being on osteoporosis medication for 20+ years?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

mcchesney | @kathleen1314 | Feb 19 10:15am

I have been on the supplement strontium citrate at a medical dose level for about 28 years. Normal bone density now, normal bone quality and no side effects, no fractures.

I did cycle to a maintenance dose for a short period of time and maintained my bone density with just a small loss. But with age, it seemed smart to up the dose back to the osteoporosis dose. Plus, my joints etc just feel better on the higher dose.

nycmusic | @nycmusic | Feb 19 11:06am

Not exactly a reply to question about long term OP meds , there are things we can do, we aren’t helpless…many of us do exercises, eat a healthy diet with some OP adjustments, and take very carefully researched supplements—all working with our doctors…if i need to do more, then will consider well-tolerated meds and/or BHRT patches…the idea of tough meds for life scared me, so I’m going into this very carefully…we do need better choices, no question…wishing you luck.

shorty321 | @shorty321 | Feb 19 1:12pm

In reply to @nycmusic "Not exactly a reply to question about long term OP meds , there are things we..." + (show)

@nycmusic , is your osteoporosis severe?

nycmusic | @nycmusic | Feb 19 2:59pm

In reply to @shorty321 "@nycmusic , is your osteoporosis severe?" + (show)

@shorty321 no, it is not severe at this time.

oopsiedaisy | @oopsiedaisy | Feb 19 3:30pm

It's a good question and one that many of us are facing. I started treatment at age 57 in 2018. Did just over 5 years on Fosamax and never thought once of my osteoporosis during that time. I had a vertebral fracture at the end of 2023 and have now been on anabolic medication for almost two years, with a round of Evenity finishing up in April.

I do not plan to continue on medication for the rest of my life unless I fracture again. I plan to do two years of Reclast after the Evenity. I will refuse to take Prolia as the risk of rebound fractures concerns me and I don't want to face that situation if I ever had to stop the Prolia for any number of reasons.

I have been following all recommended lifestyle routines in an effort to address my osteoporosis and will continue to do that.

The story of Dr. Keith McCormick might inspire you. He was diagnosed with osteoporosis many years ago in his 40s, suffering multiple fractures.He began studying the causes of osteoporosis and wrote a very comprehensive book on the disease called Great Bones. He did anabolic treatment with Forteo followed up by a year of Fosamax many years ago and has remained off drugs every since. His DEXA scores haven't changed that much over the years once he started addressing diet, exercise, and supplements.

I'm hoping to do the same and continue to manage my osteoporosis after this round of medication in the same way.

cat1203 | @cat1203 | Feb 20 8:27am

In reply to @oopsiedaisy "It's a good question and one that many of us are facing. I started treatment at..." + (show)

@oopsiedaisy , you said "have now been on anabolic medication for almost two years, with a round of Evenity finishing up in April." Do you mean you have been on Evenity for two years, which I thought was always just for 1 2 months, or that you were on a different anabolic for two years and are chasing it with Evenity?

I'm wondering if the cause of osteoporosis plays a factor in whether one can achieve the same results McMcormick did (being able to go off drugs by just addressing diet, exercise and supplements. ) I'm not sure that would be the case for those of us with postmenopausal osteoporosis, although I'd like to think so.

oopsiedaisy | @oopsiedaisy | Feb 20 9:54am

In reply to @cat1203 "@oopsiedaisy , you said "have now been on anabolic medication for almost two years, with a..." + (show)

@cat1203 I did four months of Tymlos and two months of Forteo before switching to Evenity. This is all since June 2024, so not quite 2 years.

I was not tested between the Tymlos/Forteo and Evenity. I haven't had a DEXA since June 2024 and my insurance company only allows them every 2 years so my next one will be this July.

I've also been on bioidentical HRT for years.

To be clear, I am not saying that one can just use lifestyle to reverse osteoporosis. I tried for four years and it didn't work. I also recently found out that I have hypercalciuria which may have contributed to my lack of success using lifestyle changes alone.

My hope is that by taking anabolics and addressing my hypercalciuria, it might be possible to avoid spending the rest of my life on osteoporosis medication. A lot also rides on whether this anabolic therapy has helped at all. If I haven't had a gain in bone density it doesn't make sense to me to continue with meds long term.

cat1203 | @cat1203 | Feb 20 1:16pm

In reply to @oopsiedaisy "@cat1203 I did four months of Tymlos and two months of Forteo before switching to Evenity...." + (show)

@oopsiedaisy thanks for the clarification. So, did you switch to Evenity because you were suffering side effects from the Tymlos and/or Forteo? I'm currently on Forteo and like you don't yet know if it's helped. Assuming I've had good gains I plan to follow up with Reclast for a year or 2, at which time I hope to go on a drug holiday, even if I have to go back on something eventually. Like you, I hope to avoid spending the rest of my life on osteoporosis meds. @shorty321 I know my responses haven't addressed your question and went off on a little tangent so I apologize for that. I don't have an answer unfortunately and I'm not sure doctors do either, except to just keep switching to different drugs when we hit the time limit on each one. Maybe the best we can do is get a drug holiday between drugs and keep an eye on DEXAs to know when we need to start up with something again.