Treating Osteoporosis: What works for you?

Hello, my name is Toni. I’m a healthy 75 year old woman with Osteoporosis. My T-score of the spine is -3.5. My Hip is -2.5 and the my Neck is -3.2. I’m also a breast cancer survivor. My Endocrinologist has wanted me on Prolia for several years. Reading and being informed of the side effects of this drug and other drugs for osteoporosis, it tells me I am not a good candidate. I have always taken the natural approach to treat whatever ails me with diet and vitamin supplements. A few years ago I was seeing a Functional Doctor who was wonderful. He is no longer on my Insurance and is quite expensive for me to go out of network in order to see him. At this point, I am not sure I am taking the best vitamins and minerals (and their dosage.) I’d appreciate any feedback and suggestions. Thanks!

Keith McCormick's book "The Whole Body Approach to Osteoporosis" is a good resource, but know that he did medication before a natural approach. Dr. Lani Simpson is another resource but she also is going on meds at this point.

With a spine of -3.5 have you considered Tymlos, Forteo or Evenity? I started Tymlos at a low dose (2 clicks of the pen out of 8) and moved up. Side effects fade.

I have several spinal fractures which cause pain and disability. Believe me, you do not want to risk fractures.

Thank you for your reply. You have given me a little hope that perhaps I should try Tymlos injections. I have an upcoming appointment with my Endocrinologist next week and will discuss this with him. I'm just wondering, if you are experiencing any side effects from Tymlos. If you so ... what are you feeling and how you are treating them. Also, the injections should only be taken for 2 years. Does this means the bones are stronger and no longer need treatment?

I started with two clicks and moved up slowly. After a month I made it to 6 clicks, which my endocrinologist was really happy with. I alternated 6 and 7 for awhile and now do 7 clicks every day. I tried for years to get on to Forteo which is full dose only.

Side effects at first may include headache and dizziness, and brief fast heart beat. I had those when I started at 4-6 clicks. But not when I started lower. I still have some weakness but only maybe 2 days out of 6.

I cannot say that there are no side effects. I can say that even on a day when they are very noticeable, they fade in 3 hours or so.

The thing is, I have several fractures. I would stick with this no matter what. It is harder to feel motivated before fracturing. I wish I had found Tymlos earlier! I has assumed the same problems as I had with Forteo and tried to get into a trial for the Tymlos patch, and fractured in the meantime.

My doc said we would lock in gains with Reclast but maybe 1/4 dose and then I can take a break from all meds as long as I am monitored.

ps I had breast cancer and those meds did cause more bone loss

I'm cross-posting this excerpt from an article by an oncologist at the ACSO website so people can know more about the FDA approval process and what to ask their doctors, especially about any new drug. And so people can understand the big difference between known adverse effects (legally-required to be included in the "package insert" given to the customer along with the prescribed drug at the time of receipt) and the 'post-approval' adverse effects later reported. [When you read of a class action lawsuit against a drug manufacturer, the frequent focus is on adverse effects users experienced that were not fully-identified or investigated before the drug was approved.]

There are other factors to consider when taking a new drug. Including whether the prescribing physician is 'incentivized" by the maker or ywhether you might be an inadvertent participant in a drug study without being informed so you can decline.

The FDA's FAERS website is a public-access website where many post-approval adverse effects first show up. But they are thought to represent less than 20% of such incidents as doctors and patients have a low rate of reporting.

Knowledge is power and the basis for confidence in the drugs prescribed. I hope people will be very proactive in understanding drugs recommended to them. And especially diligent about any new drugs. This article highlights that some doctors are legitimately concerned that the FDA is dropping the ball on protecting us when it rubber-stamps drugs that actually failed in the required follow-up testing. [I upper-cased critical words.]
*****************

Raising the Bar: Rethinking the Accelerated Drug Approval Process

"More concerning was the fact that EVEN WHEN confirmatory trials FAILED to show a benefit, we have seen instances where the FDA convenes an advisory committee to decide whether to rescind the drug’s indication. In many cases we looked at, the committee has voted to continue the drug’s market approval, despite the drug having FAILED the confirmatory trial. And in recent years, we have seen an uptick of cases in which the FDA gives FULL approval based on surrogate endpoints without having to undergo further evaluation in confirmatory trials."

'By doing this, we inadvertently lower the bar for approval, which increases the number of drugs in our armamentarium, but it also allows too many drugs with uncertain benefit onto the market."

"This LOWERING of standards for new drug approvals is not a new issue. In fact, in 2014, the ASCO Cancer Research Committee challenged researchers and patients to raise the bar on expectations from novel therapies to significantly advance cancer care. So, we need to continue to press forward and make substantive changes to the system."

https://ascopost.com/news/june-2022/raising-the-bar-rethinking-the-accelerated-drug-approval-process
.

@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

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.

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?

@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.

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.

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.