Conflicting Advice

Prolia has a serious rebound when stopped, with decrease in bone density and increase in fracture risk. People then go on a bisphosphonate, preferably Reclast due to its potency vs Fosamax. Lately experts like Keith McCormick have been advising Prolia for 1-3 shots so that Fosamax (or Reclast) can more strongly counter the rebound. McCormick also has some complicated instructions for that transition, using bone marker testing to determine the best timing of a bisphosphonate after Prolia.

People can do Prolia longer than bisphosphonates (bisphosphonates are used for 3-5 years generally), but then there is rebound when stopping Prolia....apparently according to McCormick's book "Great Bones," possibly leaving you worse off then when you started. My doctors rarely use Prolia.

Does your rheumatologist think you would stay on Prolia long term? Has that doctor discussed what to do after Prolia? We all need long term plans.

If your bone density is not too bad, an anti-resorptive might be appropriate. Insurance likes us to start with them because they are cheaper than anabolics!

If your bone density is poor, the advice from McCormick, videos on YouTube (see Ben Leder's "Combinations and Sequencing..") and my doctors is to do an anabolic first: Tymlos and Forteo are anabolics, and Evenity is both anabolic (first 6 months) and anti-resorptive.

I hope you can find a doctor you trust! I use an endocrinologist who mainly does osteoporosis.

Thank you. I did read some of "Great Bones" which prompted me to seek a second opinion. I'm thinking the endocrinologist recommendations might be better. No easy answers here.

The breakdown of bone from glucocorticoid-induced osteoporosis may be different from other low estrogen bone loss. With PMR I’m guessing you’ll be on some type of steroid over the years. By the way, one of the articles I read said that bone loss from prednisone is highest in the first 6 months, then levels off. Your bone density now might be at its lowest from the prednisone and would hopefully recover? But the likelihood that you’ll be taking some/another steroid still means you’d want to protect your bones, and it may be over the long haul - meaning finding a drug you can use over the years.

The article below says that glucocorticoid steroids cause bone reabsorption and with PMR, an anti absorption med is appropriate.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9837290/
My understanding of alendronate and Reclast is that it stops the break down of bone but might? interfere with the ability to continue to build new bone. It would be great if one of the anti-absorption meds didn’t affect the body’s ability to continue to build new bone.

For me, I’m so low estrogen that I’m just not going to build bone. I’m on Reclast, and when I stop my bones are only good until its effects wear off. But I’m still not building bone after that. But if the action causing your bone loss is a steroid, that might mean when you stop meds (steroid & anti-absorptive bone) you might start building bone on your own. That’s where it might make a difference as to which anti-absorptive med you take - is it going to lock you into be unable to build bone when there is a possibility you won’t be on a steroid. (Not sure I explained my idea well enough for anyone else to understand!!)

I second @triciaot 's opinion on corticosteroids' effects on the bones. If your dexa readings are poor, and/or poor TBS score, you might want to discuss with your doctors about using an anabolic first before an antiresorptive, provided your health conditions allow you to take anabolics. There are many publications showing Forteo's effectiveness in treating glucosteroid induced osteoporosis.

MicheleM @saab

I think your idea of getting a second opinion from someone like an endocrinologist who specializes in osteo has merit. You didn’t say how severe your osteo is? Not to be an alarmist, but I have learned from others on this site that just because you feel strong and fine and pain free, does not mean you will not fracture unexpectedly from some unfortunate movement or fall. So, especially if your numbers indicate advanced osteo, please read up on the things NOT to do while you consider your treatment options. That helped me a lot during my wait to be seen and tested!

I initially went to a rheumatologist that my PCP referred me to, when my spine dexa came out to be -3.6. (Not steroid induced) A long story, but his treatment plan for me was fosomax, and when I surely would not be able to stand it (GERD), Tymlos, then a lifetime of Prolia. He wasn’t even going to try to get Tymlos approved through insurance for initial treatment, thinking it futile.

I then went to an osteo specialist. She did extensive testing and got me approved for Tymlos as an initial treatment. In the mean time, she sent me to knowledgeable and cautious PT who helped me a lot with safe exercises and balance.

There is a whole world of information on osteo that we never knew existed until it became an issue! I wish you blessings and wisdom as you wade through it all and find out what is best for you!

Thank you, I need the blessings and wisdom. You'd think there would be some sort of consensus to follow. My Rheumatologist could be right although he never talked about the differences of antiresorptive and anabolic medications. But then again, I feel the Endocrinologist might have more experience in treating osteoporosis. LOL. I keep changing my mind.

@Michele many of our doctors don't explain antiresorptive vs anabolic or much else unless we ask. That is why we read, watch videos and come on this forum!

The fact that bisphosphonates stay in the system for a long time is why there is no rebound and why it is used to "lock in" gains from other meds.

For early osteoporosis people tend to do either holistic methods of Fosamax. For my doctors Prolia has fallen out of favor and they don't use it much.

@saab

I can relate. I was thrilled to be approved for Tymlos and have been on it for about a week with no significant side effects. I should be on it for the next two years and then we will see! My osteo specialist made no mention of following with Prolia in my case, but mentioned some other possible options when the time comes…..I have also learned from this site that there is no one size fits all, but a lot of good info is definitely shared here by people who have gone before!

I didn’t mean to imply that an anabolic bone builder be used instead. The open mic discussion from the 2024 Santa Fe Symposium, thanks to another member here, has maybe explained my point better. There are some drugs that don’t lock down the bone when stopping the med, which then allows bone building to happen when an anabolic is taken as a second step in bone health. If I were facing years and years of taking bone meds, I might want the option to use a milder drug to begin with and still have the option for a bone builder if needed later.

In the presentation discussion it was stated that Actonel (risedronate) was this type of med. Denosumab could be used right after stopping Actonel, and bone building started up right away.
For the patient that was discussed, her bone density was in the -3 level and she first started on denosumab, took a break and switched to Actonel, then went back on denosumab and continued to build bone. If your bone density doesn’t start out that low then the first drug would probably not be denosumab.

Alendronate, or zoledronic acid, might be an option for first drug you take, usually for 3-5 years. The gains are usually locked in for a few years but then density again begins dropping.
From the commentary, risedronate, might be a different option especially if the plan is to follow up with an anabolic if the expectation is that your bone density loss might speed up as you age due to very low estrogen, hysterectomy, or family history.

I am not a doctor and I’m only interpreting what I think the specialists are saying, and my own experience with bone density issues. I bring this info up as a talking point with your doctor as you figure out what is best for you.