What to try and for how long after an Extended Drug Holiday

Maybe wait for the next scan? Have you ever had osteoporosis? I have been told that Reclast should only be taken 3-5 years. Prolia can be taken longer but yes when stopped, you have to take Reclast again to prevent rebound loss of density and increase in fracture risk.

The question I would have, since both are anti-resorptive (reducing bone turnover) there might be issues of bone quality that are cumulative, either with more Reclast or with the combination over time of Reclast and Prolia. I also don't know if a break from Reclast starts the clock again so that you could do more.

I guess I would also ask if you need meds, if you are still in osteopenia, and could try lifestyle/holistic approaches. Some doctors aren't medicating osteopenia, I have been told.

So lots of questions and we can all learn from the answers you get!

Thank you for your thought provoking reply. As to have I ever had osteoporosis, the answer is unclear. In 2005 the density in my arm was measured at -3.5 which should have sent up a red flag to at least my doctor, since back then I was clueless. New endocrinologist was wondering if the arm had ever been measured after seeing that while my L1 to L4 wasn't quite in the osteoporosis area, L2 definitely was, at -3.6. So I think the scoliosis might be interfering with accurate measurement. I hope the November scan which will include my arm provides some answers. Couldn't find any papers addressing whether a very long drug holiday allowed your bones to "reset" although one (several years ago) suggested this was an area to study.
Maybe the answer is to go without drugs for a couple of years if I'm still in the osteopenia range. I'm not sure lifestyle changes would help as I already clock in 3 miles a day (2 in the heat of the Texas summer), lift weights and drink a gallon of milk every 2 days. Having been a milk drinker all my life, I hoped that all that calcium ended up in my bones but it was not to be.
I'll bring up the issues of bone quality and scoliosis issue when I meet with the doctor after the scan. I've brought up the scoliosis before only to be told it's accounted for. Unfortunately I found a paper that says otherwise. I'll keep you all posted on my discoveries.
Thanks again.

@hungrybirder I have scoliosis too so thanks for bringing that possible factor in DEXA's up. Taking a couple of years off seems like a good middle road.

If your scores are osteoporotic you could ask your doctor about a bone builder- Forteo, Tymlos or, probably, Evenity. The arm is, I believe, cortical bone and the spine is trabecular so that is another thing to think about. Evenity might be a good choice in that regard. Check with your doctor on that too!

Hope your scoliosis is minor. I've had mine since childhood (you too?) but see that osteoporosis can cause spinal issues resulting in scoliosis. There are some European authors that suggest the DEXA results of women with scoliosis require a more detailed evaluation evaluation of T scores at each vertebra to make a diagnosis. Possibly that is what my endocrinologist was thinking when she brought up my L2 score. I'm sure I'll know more after my next scan and visit ... at least I hope so.
Will keep you posted. Thanks for you advice.

What about your hip T-Score? Hips are a big factor in choosing osteo meds.
Also including your actual scores is useful to those trying to respond.
You might want to have someone else evaluate your DXAs if you get this next one and still don't trust the result or question the result due to scolosis. Having one vertebrae way worse than the others is a good reason to have a second opinion on what's going on in a DXA. There may be something going on that requires more investigation.
I paid to have Lani Simpson review my DXAs when I suspected there might be an error. It was useful but not pleasant news that my jump in bone loss seemed real and that the DXAs looked accurate. I'm not certain if she still offers this service? If not perhaps others do?

Hi @awfultruth, I feel so fortunate to have found such a wonderful knowledgeable group. I'll see what the next scan shows but maybe I should have someone else review it as well. Thank you for the suggestion. As for my hip scores they have fluctuated between -1.6 and -2.3. Most of that time I wasn't on any medication. The -2.3s you would think would be the most recent but those values are from 2005 and 2022. I'm sure variations can be attributed to different testing location and machines but 8 of my 9 scans were at the same hospital. Seems like a crap shoot at times.
I'm sorry your DXAs turned out to be accurate. Can I ask what your course of action has been?
Thanks again for the review suggestion

Hi @hungrybirder,

After a DEXA in 2007+/-, my PCP told me I had osteopenia. My scores were clearly in the OP ranges at approximately age 52. She said not to worry about it :(. Fast forward to 2011 when a new doc reported that I had OP, not osteopenia - what a surprise! He recommended Reclast to maintain my scores, which really weren't all that bad.

I had five Reclast infusions, 2011-2015, without issue or side effects and my doc recommended a drug holiday. Reclast was a fairly new treatment at that time and my scores stayed basically the same while on the treatments. After a DEXA around 2017, my scores had improved so greatly that my rheumatologist continued the holiday. It appears now that those scores were erroneous!

In 2019, another DEXA revealed the errors of 2017 and I was again prescribed Reclast in 2020 and I think 2021. It has been revealed, by virtue of x-rays and an MRI that I have had four compression fractures.

I'll get my "one year Evenity chip" this week and need to talk to the doc about whether or not I can continue Reclast since it worked very well for me. The doc wants me to begin Prolia, but hesitantly said I could probably do Reclast when I pressed him for answers. He, however, forgets what treatments I've been on and seems to be lacking about reviewing my drug history so that he can give me good intel on whether or not I can go back to my good old friend, Reclast.

I don't want to undo any gains I've had (spine is now at -1.0), so I want to make an informed, correct choice. Prolia scares the bejeepers out of me, so I'll try to avoid it if I can.

Ask your doc what he/she thinks about the number of lifetime infusions a body can stand. My scores were never too terribly bad, but because of the fractures, my doc felt Tymlos/Evenity would definitely give my old bones a boost. Sorry I don't have a perfect answer for you, just some history for what it's worth.

Have a great week, @hungrybirder and all! Cheers!

@hungrybirder I agree this is a good group of people with good knowledge and good intentions - trying to help each other get better.
If -2.3 is your recent T-Score for your hip then you are not too bad there. Hopefully if you look at your T-Scores over time you can see a reasonable consistency to them. If they jump up and down much without a strong intervention of some kind the scores are probably suspect. For instance my scans show a pretty strong downward trend. Not good but at least I can see that scores are likely reasonably accurate and that helps me decide how to act.
If you could figure out what readings seem accurate for your spine that would help decide your course of action.

As to your original questions I think you can potentially go back to Fosamax or Reclast but it depends. How many years on each? How long ago? Any bad side effects? Do you have T-Score changes for the drugs? Those drugs do slowly leave your bones but they stay there for years. You can I believe use the ctx bone marker to judge how suppressed your bone turnover is. You use these anti-resorptives to suppress bone turnover but you have to weigh that against suppressing bone cleanup so much and so long that your bones have less and less quality.

Like a number of others on this site I like the idea of the anabolic meds to build bone being given priority over the anti-resorptives to prevent bone turnover. Prolia I think, again like some others on this site, is way more dangerous than the other meds. Maybe it's reasonable in some situations but the way it's now promoted seems just nuts to me.
Don't feel like you have to make an immediate decision. Bones are slow. Think it through carefully and take your best shot.

As for me I've got my 9th Evenity shot tomorrow (my first osteo med) with no significant side effects so far. I'm also doing 3 very different types of workouts, each one twice a week with one being a modified version of the LIFTMOR protocol. I also walk a couple of miles most mornings usually with a weighted vest. I also exercise and walk in ways that are mostly fun for me. It's not drudgery or something I hate to do. For instance one of my workouts is the Beat Saber vr game. It's the most fun ever and what a workout if you so choose to go at it as I do.
I do what I can to eat in a way I think makes sense but that's very complicated by food sensitivities so it would not make sense to others. I take additional calcium because my diet is way too low in calcium. I take some other supplements too but that's limited again by food sensitivities so the choices would perhaps seem odd to others.
So I do the med, I do the weights and other exercises and I do whatever else I can to keep my self healthy and feeling good in a general sense. I would love to improve enough bone wise to feel like it's safe to play pickleball and badminton again.

Well cheers back @beanieone, It was great to hear about your ongoingjourney. It seems to me that finding a good doctor who is up to date is the place to start. I think they are rare. And of course, at the beginning we tend to be clueless and believe what we’ll told. I’ve had no problem with tolerating either Fosamax or Reclast. I’m hoping I can stay on Reclast another year or two. My latest endocrinologist suggested I read up on Prolia but I’m not sure she’s committed to it. We’ll see what the numbers say later this years. Thanks for sharing your history.

@awfultruth why would playing pickleball and badminton be dangerous?