Tymlos treatment plan - 18 months vs 24

jasperina, while the black box warning for the risk of cancer has been lifted, the recommendation that it be used for a maximum of 24 months remains. It remains because there has been no research done on either of the true anabolics for extended use. Practitioners are not bound by the recommendations and some are taking that advantage for their patients.
The 24 month limit was applied because of suspicion for a risk of cancer with extended use. There have been no studies on extended use because of the ethics involved with the risk for patients.
There are three other considerations with longer use of Tymlos easily clarified by testing. Tymlos can cause hypercalcemia. Some develop antibodies to Tymlos. An increase in the cells that break down bone has been seen starting at 18 to 24 months of use.
You should be monitored for hypercalcemia during use of this medication. You can be tested for antibodies, though probably won't be with requesting it. And bone markers CTX and P1NP can tell you if the bone cells are at equilibrium.
I'm happily on my third year of the similar drug Forteo. It is a little less likely to cause hypercalcemia or antibodies (though the risk is there), I'm watching the bone markers carefully for a rise in CTX.
It is so good that you are looking ahead and questioning everything.

Has anyone seen any research on taking Tymlos (or Forteo) as @jasperina says— using it for 12-18 months and “saving” 6-12 months for later in life? @gently, as far as you know would that have a different profile/effect than taking it continuously? Wondering if a number of years off anabolics before a second phase would restart some of the initial benefits while resetting/reducing some of the risks.

wondering1, I have been thinking, without knowing. The research is powered in directions that don't answer the questions we have. From the research we understand that these two anabolics lessen in effect after 15 month in most patients in clinical trials. Theory from bone markers is that while PTH therapy increases bone building cells rapidly at onset of treatment, but the presence of those cells increases the number of cells that break bone down until at about 15 months the patient has diminished osteoanabolic effect. Since it appears to be true that bone markers predict the three month effect of increased mineralized bone. It would be sensible to test bone markers at the 13th and then the 15th month. When those markers indicate a slowing down of bone growth stop the injections. From my limited experience, three weeks off the injections drops the CTX more rapidly than the P1NP, which also drops. This is not presently an approved use of bone markers. To your point, I think that the pause before the second phase restarts the initial benefits resetting the process. Individual results indicates that the risks, not cancer, but hypercalcemia and hyperparathyroidism are not inherent in the medication, but is hidden in some few individual's genetics.
From the clinicals we know that when you stop taking Tymlos or Forteo, whatever caused a person's osteoporosis will resume causing that loss of bone. Current protocol is to take and antiresorptive, usually Reclast before taking yet another medication.
Because of financial incentives and separately the political climate, I don't think there will ever be clinical trials.

I'm impressed with your knowledge, and I probably only partially understood everything here, but I keep thinking that if you take Tymlos or Forteo, it moves the needle back on osteoporosis, but only temporarily. It eventually goes back downhill so this is just buying you a little time. I wonder if the side effects and risks are worth a temporary improvement. With so much of the population increasing in age, you would think there would be more research.

You have to follow up with another medication. You don't take Tymlos or Forteo and then just stop with no further treatment whatsoever.

Most people have no side effects, and the cancer risk has been disproven. It's well worth trying. It got me from osteoporosis to osteopenia; once I finish, I will have a lot more "runway" to work with going forward.

Yes, I will definitely be following up, probably with reclast. I was wondering if anyone else had heard of the banking six months of Tymlos for another time during my life, should my bone density decline again. Like 10-15 years down the road. I heard some doctors are taking this approach and I wondered if anyone had heard of it.

Yes, that’s exactly my question but maybe I didn’t say it right. I’m 69 now and often wonder what the end game is with all these meds.

@jasperina, Saving 6 months’ worth of Tymlos for later use makes theoretical sense. However, a shortened course (6mo) may not produce the significant BMD gains you’re hoping for—especially following antiresorptive therapy (Reclast). One alternative to consider in the future is Forteo, which no longer has a 2-year usage limitation. @gently’s approach to extended anabolic use is particularly intriguing and, if proven effective, could reshape long-term osteoporosis management.

old info. I don't trust online doctors myself. I like a real "medical department" with a doctor and staff I can interact with and ask questions to, bug, and see other patients. I did one reclast, now at a year and a few months on Tymlos and then back to 2 annual reclast. I test and my numbers are looking good. I researched a lot and I am comfortable with where I am at. Go for my DEXA next month and another round of CTX P1NP in Sept. and I'll report back!

The problem, as usual, is the health insurer. Many, perhaps all, still have the restriction "no more than 24 months of Tymlos or Forteo", unless you have shown that you are still at a high risk of fracture / T-scores still bad.