Treating Osteoporosis: What works for you?

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

@catluvr999 Tymlos and Forteo do not affect resorption the way the other drugs do, and works with the parathyroid. Do you have a doctor?

They may have some minimal impact:

"Tymlos acts like PTH, binding to one of the PTH receptors in your bone. The type of receptor it binds to and the way in which it binds promotes bone formation and minimizes the other function of PTH, namely bone resorption, and calcium release."

Anabolics like Tymlos and Forteo work mainly by building bone, whereas biphosphonates and Prolia work by affecting resorption. Tymlos and Forteo do not cause the dental/ONJ issues or atypical fractures that may happen (if rarely) with the other drugs.

Evenity does both and does carry the risk of ONJ or atypical fractures but is only used for one year.

It might reassure you that anabolics like Tymlos and Forteo may be used to heal the atypical fractures caused by biphosphonates (or PRolia).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4691592/
Background
"Bisphosphonates (BPs) are the most commonly used anti-osteoporotic drugs, which have been proven to reduce the risk of osteoporotic fractures. However, use of BPs, particularly for long periods of time, is associated with an increased risk of atypical femoral fracture (AFF). Healing of BP-associated AFF is usually delayed because of suppressed bone turnover. Teriparatide (TPTD), a recombinant form of parathyroid hormone (PTH), enhances bone healing in patients with delayed healing or non-union."

This overview gives more and better information. Though I think most people who take calcium and vitamin D (hopefully D3) also take vitamin K now, which wasn't mentioned.

Osteoporosis: A Review of Treatment Options
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5768298/

Here's a quick overview from Harvard Health on the different drugs currently used to treat osteoporosis. The side
effects and risks vary widely so this is just a survey of what's currently on offer. I've read studies looking at which alleles on which genes seem to be most prognostic of osteoporosis so hope that genetic testing might also offer some guidance in the near future.
https://www.health.harvard.edu/womens-health/osteoporosis-drugs-which-one-is-right-for-you

There are a handful of choices with respect to drugs for osteoporosis and, regrettably, none of them perfect or free of thought-provoking side effects and potential side effects. If there is one that does "make bones healthy" as the pharmacist mentioned, I've not heard of it. Unless she was referring to the few drugs that seem to trigger the growth of new bone?

I've wondered too why and how bisphosphonates can induce those longitudinal fractures of the femur (or osteonecrosis in rare cases for that matter). I suspect as you do that there's something else happening when old dead bone cells aren't being slouched off?

Hi. Thanks. I called a pharmacist, but she didn't seem to even absorb my question. I asked "Is there a medication that just builds bone, without *also* preventing resorption? I am thinking I want a med that's like what Restasis does for tears, producing tears, except for bone....and not have the anti-resorption aspect. (The anti-resorption, I am afraid, is what might cause the extreme fractures -- "atypical femoral fractures" described starting at spot 10:35 in the Youtube video: https://www.youtube.com/watch?v=1MripZTWMBQ). The pharmacist replied: "I don't think there's a medication that make your bones reproduce to the point where ... <she didn't finish her thought>... but there are medications that can make your bones healthy, and that's why they ask you to take calcium and vitamin D." Her reply was just a rambling mess; seemed medications wasn't her wheelhouse.

PS -- Seems my first link in my main post above was right, and I haven't been able to locate the right link, sorry.

I wish that someone in the medical profession would respond to this. You have raised a number of questions about these medications we all should be asking. No one wants to fracture and become disabled nor do they want to take medications with adverse side effects and suboptimal (or no) benefit.

@catluvr999 I believe Tymlos and Forteo do not affect resorption but Evenity does, though to a lesser degree than biphosponates and Prolia. You can double check with a doctor or pharmacist. I have been told that Tymlos and Forteo improve bone quality even if density does not significantly improve.

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?

@callalloo

Good article. All politics aside, it was very easy to understand the need for accelerated drug approval and also the pitfalls that occur in any powerful regulatory agency.

FL Mary