Significant osteoporosis: I need a bone plan

THanks @colleenyoung. @hollygs this article states that markers (all markers?) increase on Forteo and Tymlos. This is what I usually see. That other article that I posted above is the first time I have seen something more complex. Interesting that this article says bone markers are not useful when on anabolics since so many here on the forum are using them with Forteo and Tymlos to see if they are working, (I do have kidney disease so I don't use the CTX...) So confusing! Here is an excerpt:

"BTMs are not of much help in monitoring people on anabolic therapy. Anabolic therapies — such as teriparatide (Forteo), abaloparatide (Tymlos) and romosozumab (Evenity) — work by stimulating bone formation, which leads to increases in bone mass and density. Since new bone is being built, the markers are expected to increase and are not helpful in the decision-making process. There is also no role for monitoring after completion of anabolic treatment, as all these agents should be followed by treatment with anti-resorptive drugs without a pause in treatment."

@colleenyoung Thank you so much, I appreciate your reply and inclusion of the link.

@windyshores I agree, it is confusing! This is one of the reasons why medical professionals might bemoan patients using Dr Google. Ideally, our chosen specialist would be able and amenable to providing clarification about these seeming discrepancies as they apply to our individual case. At least one article I've read supported the use of monitoring BTMs as patients may have to wait for their DTX. There are also varying opinions about the optimal time to get a DTX, sometimes related specifically to the drug used and sometimes not. I don't understand how a doctor can decide on what sequence their patient will follow if they don't know what their response has been. Sometimes a protocol is established and followed to the letter, but sometimes it isn't. I think that this field is relatively new and ever-evolving. That may be exciting academically but challenging personally.

Colleen,
Can you tell me how to create a new thread in this osteoporosis arena? I am newly diagnosed with Osteoporosis. My endocrinologist ordered blood work and a 24-hour calcium test. I have a question regarding the Calcium 24-hour urine with creatinine test she ordered (LabCorp code: 003324). I thought I was supposed to collect urine for 24 hours, but when I went to LabCorp to pick up the collection jug, I received 2 jugs and was told it was for two tests: 24 hours urine collection for the first jug, then another 24 hours collection for the second jug (containing Hydrochloric acid). Is that right?

@hollygs I wish there was a "100%" button for your post!

My main endo doesn't use bone markers, and my other endo does. Keith McCormick is very big on them. Each has their reasons. Ugh.

Researchers, doctors and drug companies didn't know that bisphosphonates could cause atypical femur fracture or jaw necrosis; they didn't know about Prolia rebound; they didn't know that Evenity is only anabolic at first. The warning of osteosarcoma for Forteo and Tymlos was withdrawn.

There doesn't seem to be consensus on certain sequences due to lack of studies, and insurance policy still prioritizes anti-resorptive that affect effectiveness of anabolics. There don't seem to be established long term protocols for those of us who have to stay on meds long term.

I do wonder if this was not mostly a women' s disease, if research might be more advanced.

@sirrom, learn how to start a discussion and more useful tips in the Help Center https://connect.mayoclinic.org/help-center/

Before starting a new discussion, you can search the group to see if a related discussion already exists:
- Osteoporosis & Bone Health Support Group https://connect.mayoclinic.org/group/osteoporosis/

@windyshores I think it's useful to remember that when patients seek a second opinion, we're getting an opinion. It actually applies to every consultation including the first. I find the lack of consensus on treatment protocols to be the most disturbing. We're firmly in an era where patients are being proactive and doing their own research, and with osteoporosis treatment we're in the weeds. People are beginning to realize that every drug has its risks - even the once seemingly benign NSAIDS ASA, acetaminophen and ibuprofen are no longer considered globally safe. Patients used to insist on receiving antibiotics for viruses, and doctors ended up providing them despite knowing that they would be ineffective and that created many problems down the line. As populations age, the long-term effects of medications are revealed. We're nowhere near that for most of the drugs currently available to treat osteoporosis. There are risks, and they're significant. Considering the alternative,
most doctors believe that the benefits outweigh the risks. It's likely that the risks aren't highlighted to the degree they should be, and that may be due to noncompliance being common. You're probably right regarding the lack of research due to this being more of a woman's disease.

It is. Get the bone markers. Not every osteoporosis sufferer has the same underlying causes. The markers help determine the correct treatment

The matter of bone markers is apparently very complex. With kidney disease, for instance, I know I cannot rely on the CTX. I think it is reasonable to think, as my endo does (chair of top endo dept.) that they don't tell us everything about what is going on in our bones. But if used with caution and at the right time (I have missed the right times!) they are certainly useful I am sure.

I know that menopause and cancer treatment, both of which reduced my estrogen, are the main causes of my osteoporosis. Testing of parathyroid and history of steroid use, exttreme athletic activity, eating disorders, use of acid reflux meds, and celiac are all possible contributors. Also we are living longer than humans ever did!

A popular thyroid medication taken by 23 million Americans may be associated with bone loss, a startling new study finds.

Levothyroxine — marketed under brand names such as Synthroid — is the second-most commonly prescribed medication among older adults in the US. It’s consumed by about 7% of the US population.
https://www.yahoo.com/news/second-most-commonly-prescribed-drug-200155456.html