Treating Osteoporosis: What works for you?

@callalloo not sure why you think the femur score is not important. Hip fractures are very disabling. I wonder if I "misspoke" awhile back. My report says the femur neck is not reliable to measure change. That may be particular to me, and it may not mean the femur neck score is unreliable. To be honest, I don't know what it means. But the femur score is different from the femur neck score anyway.

Good afternoon @toni7. Your concerns are legitimate. And the basket of options can be extremely confusing. There are three rather new medications that require injections and have been developed to build bone. The one with the longest medical history is Forteo. The next one is Tymlos. Both are taken for two years. The newest one is Evenity which not only builds bones but also protects the bone from reabsorption during the one year schedule.

Because of uncomfortable side effects with bisphosphonates, I chose two years of Tymlos. My scores for hips returned to the osteopenia level and the other scores remained stationary which means they held their own. I had no side effects except for the first few days. They were unspectacular.....and disappeared in a couple of weeks.

Then came the hard part. What next? Moving to Evenity would mean a rapid building of more bone and a less active effort at protecting as the research begins to show. Since my unfortunate reaction with Boniva, it appeared that I only had one choice and that would be Prolia.

I did finish a year on Prolia with concerning side effects and unimpressive Dexa scores. I secured periodontist exam reports indicating that so far there was no damage to my jaw and that my teeth would probably not need any surgery or implant treatments.

Nothing felt right to me so I asked for a consult in Endocrinology at Mayo Clinic. Here is what I discovered. At the age of 77, when I was told that I needed to begin the osteoporosis medications, that recommendation was way too aggressive. I did not need any bone-building or bone protection at that point based on my scores. There seems to be some anxiety among endocrinologists and other clinicians to make sure everyone gets going on something.

So......now I was in a "pickle". Evenity was too new without enough research for me and only possible for a year. Again....then what? The Mayo endocrinologist went back to look at the once-a-month biphosphonate dosage which resulted in side effects. What if you took the bone-protecting biphosphonate, alendronate, weekly instead of monthly? The dosage of one infusion a month was just too heavy for me.

So.....four weeks ago I began to take one tablet, not an injection, every Monday morning. And as you might be beginning to realize......it is working. No side effects, no joint pain, no jaw or teeth or gum pain. No nausea or injection soreness.

So just backing off from the more infrequent heavy doses is the answer for me. It might also be worth discussing with your clinician. Questions??????

May you be safe, protected, and free from inner and outer harm.
And thanks Mayo Clinic.

Chris

Yes. I got both hips and lumbar spine scanned. I have put my scores in my bio, if you want to click my username. This was my 4th scan since 2006. Unfortunately No doctor ever told me we should get our scan done on the same machine each time for an accurate comparison....I found out through my osteoporosis research and came across that. To make the comparison even worse than not being on the same machine, my scans were also on a variety of *brand* machines. Hologic has a different report format than GE does, for example....two of the common brands...the Hologic reports are much clearer to understand., IMHO. If I ever get another scan again I'll be sure to get one on a machine that has a Trabecular Bone Score (TBS) application on it, which I learned about after doing the scan. A TBS score apparently gives additional info about the bones....more about the structure that's not strictly the bone density, if I'm using Sara Meeks' (physical therapist) terminology right. She does seminars and has videos on YouTube, etc., and seems quite renown. Hopefully Echolight or some other non-radiation method will come to San Diego soon....another option instead of dexa. So much to learn.....

Am I understanding right that there is no medication that strictly builds bone *without also preventing resorption*? If I'm understanding right, the current medications available for decreasing bone loss offer only the following two choices as far as mechanism of action:

A) Stop resorption without building new bone. In essence, old bone builds up. Bisphosphonates, which are taken orally.

B) Stop resorption plus build new bone. In essence, old and new bone build up. Rank Ligand Inhibitors and Anabolic Agents (Tymlos, Prolia, among other RLI injectables; a patch possibly coming for Tymlos; and Evenity, among other AA injectables.

What I don't like about Bisphosphonates is that they stop bone resorption; therefore -- at least the way I picture what happens -- old, possibly unhealthy bone piles up that normally would have sloughed off due to being old/unhealthy. Am I wrong to be harping on the stops-resorption aspect? I've lived under a wrong general life-living mindset of "out with the bad, in with the good"? 🙁 I can't help but think there should be some med that's the equivalent of Restasis that triggers tear formation, except for new bone formation.

When I first started my research rampage into the various types of drugs available for treating bone loss, I had gotten the impression that the injectables strictly *built new bone* (without also preventing old-bone resorption) -- likely because the emphasis in various articles was their new-bone-building feature.

But in this below Tymlos patch writeup I'm getting the impression that the various injectable osteo meds are not strictly new-bone-building like I thought but also prevent resorption....just like the Bisphosphonates prevent resorption (though in bisph case without any bone building aspect). And preventing resorption is the part I don't like, if I haven't stressed that enough in this post yet.
https://www.webmd.com/osteoporosis/features/newer-osteoporosis-treatments-build-stronger-bones
I found a nice list of medication types, but it isn't thorough about their mechanism of action differences: https://www.medicalnewstoday.com/articles/osteoporosis-medication

Is there an Osteoporosis Medication Mechanism of Action table, or thorough narrative comparison anywhere that's something along the lines of the attached?

Hi, @windyshores. Thanks for your reply, which I think is a reply to my post starting "Yes, I got both hips and lumbar spine scanned." It's hard for me to follow these threads.

To answer my age: I'm 66. I'm on Medicare. When I check http://www.caremark.com to see my drug coverage with my SilverScript Choice Medicare Rx plan, I see the following (NOTE: Other formats of the alendronate varied in terms of coverage; my primary had suggested the 70mg weekly tab):

- Alendronate Sodium 70mg tablet: $0.00 for 84 days (mail order)
- Tymlos Miscellaneous Inj: NOT COVERED. See your doctor for alternatives.
- Forteo 600/2.4 Inj: My cost: $1,431.08 for 28-day supply.
- Prolia 60mg/ml Solution: $870.50 for 30 days (29.02 per day).

I can see why people just go with the bisphosphonates! Even if my recent toe "dislocation of interphalangeal joint of lesser toe of right foot" mere weeks after my osteo diagnosis counts as a break, and I don't know if it does, possibly (though unlikely anyway per your stated criteria) enabling me to qualify insurance-wise for an injectable (or patch if a third-party manages to get involved in Tymlos's discontinued patch trial), I don't think I'd go with injections at this cost. I'll start looking at what other Medicare Rx plans would cover.

What Rx plan do you have that covers Tymlos injection?

Attached is my chart I made last month of my 4 Dexa scan results, dating back to 2006. Hopefully I transcribed the numbers right; I worked hard with a Dexa-with-TBS facility rep to get the Hologic-vs-GE terminology right. I message'd the chart to my primary in June, and she wasn't all that interested. Her reply: "Your chart is a great summary and recommend you review in detail at your osteoporosis appointment. My understanding is you cannot compare different machines so that may be part of the variance between the Scripps and UCSD reports." My "osteoporosis appointment" (endocronologist) is in October.

Thanks for your suggestions about Keith McCormick and Lani Simpson. I like them both; I even had an email exchange with Keith McCormick -- to help clear up a TBS-related question I had (I haven't had a TBS score yet; I unfortunately became aware of TBS after my May scan). And I've been reading Lani Simpson's No-Nonsense Bone Health Guide book on my Nook.

I don't see any comment in my May report that says that either of my femur neck results should not be considered reliable. The comment for the left femur, for example, the problematic one (-2.8) only says "The left femur total demonstrates an interval change of -10.1% from the most recent previous/baseline study of 1/4/2016, which is a statistically significant change.

I noticed that my 2016 Dexa scan that this recent alarm is based on has some really good numbers and might be an outlier. I'm hopeful that the endocrinologist's review in October might reinforce that. In 2015-2016 I was doing a *lot* of physical therapy for my lumbar spine vertebrae instability, so I wonder if the great scores were in part because of those months of weights and pullies.

Your cancer and fracture saga is quite the ordeal and I can see how it would inform your concern my bone situation, and I super appreciate it.

Thanks again.

So to repeat: Tymlos and Forteo can be used to heal the atypical fractures caused by anti-resorptives like biphosphonates and Prolia. Their main action is to build new (quality) bone.

Forteo can now be used for more than two years.

@catluvr999 we don't know your spine score. My reports say that the femur neck score is not reliable for measuring changes. A score of -2.8 is not terribly severe as yet and if you don't have fractures, insurance may not cover the bone-growing drugs. Have you checked insurance?

One big problem with osteoporosis treatment is that the bone-growing drugs (Forteo, Tymlos and Evenity) apparently are most effective if you have not taken Prolia or biphosphonates. But doctors use the latter two meds as "front line" and insurance only covers the bone-growing drugs if you have not tolerated the others (and have severe osteoporosis and/or fractures).

With a score of -2.8, if your spinal scores are also in that range, I would consider Keith McCormick's "The Whole Body Approach to Osteoporosis" and maybe Lani Simpson MD's Facebook page. Margaret Martin has great exercises.

You can sort of run out of time with meds. I don't know your age. If, say, you do biphosphonates for 5-10 years then the allowed 2 of Tymlos, and/or 1 of Evenity, then you are left with only Prolia. Apparently people are doing Prolia forever but there are those risks of ONJ and atypical fracture, and other concerns about that drug.

The DEXA scan results are not linear even if you use the same machine. You have to look at the trend. One score will go down, then up, then down, but the overall trend of the report will be clear. Keep a chart over the years.

I have 7 spinal fractures. I could not tolerate Forteo and tried hard to get on it before my fractures. Even saw an immunologist to try to desensitize. I was on cancer meds but my doc did not want to try Reclast because of afib (that concern has been discounted) and he does not use Prolia. I tried to get into the Tymlos patch study. Then I fractured.

I guess my point is, do what you can now but don't wait too long for meds. I wish I had discovered Tymlos. But even that was a problem at first. I could not tolerate a full or even half dose. I ended up in the ER. I quit. Met with a bunch of MD's. Restarted Tymlos at 2 clicks out of 8 and moved up slowly. It's been 10 months now and side effects become minimal if you stick with it. I wish I had known all this before fracturing but I can still stand up straight! But lots of pain and disability.

You can meet with Keith McCormick online. Lani Simpson has workshops on various topics. But if your scores get worse and if your spine is worse than that -2.8, think about meds regardless of side effects!

My plan is to do Tymlos and then Evenity if I still need to grow bone. Then according to doc, hopefully low dose Reclast with a long infusion, careful monitoring, and breaks in meds if safe. My doc has me choose, and you can always make your own choices regardless of what a doc recommends.