Tymlos treatment plan - 18 months vs 24
I am 69 and female. I am on tymlos in month 5. My endocrinologist has said that the planned course is to take tymlos for the full 24 months, then switch to reclast to lock in the gains. I have never fractured and this treatment seems to be going fine so far.
Here is my question: I have seen references online to doctors that prescribe Tymlos for 18 months, then move to a medicine such as reclast. The thought process seems to be that most of the treatment gains of Tymlos are in the first 12-18 months, and by “saving” 6 months of the tymlos treatment it could be used at another time if bone density declines again. The lifetime limit for Tymlos is still 24 months.
Has anyone heard of this? If so, is there any research to back it up?
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I'm sure our doctors will help with prior auth if we need more anabolic treatment down the line. Now that the 2yr limit on Forteo is gone, it gives us flexibility for future treatment and takes some pressure off the physicians - definitely a step in the right direction.
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1 Reactionloh, this really is a risk/benefit decision. It's a little tough because we have to guess at both the risk and the benefit.
I didn't reach the same conclusion that you may have. If moving the needle back on osteoporosis two years means two additional years without fracture, I'd opt for the two years free of pain. But if a person were to decide that taking the drug is only good for two years, they might consider that without the drug in two years their bones will be much weaker than they are now. Even if you don't fracture in the two years without medication, the likelihood of fracture in the following two is much greater. It is easier to slow the loss of bone than to replace the lost bone.
Scaling the side effects of the medications appears a little different for me. The risks with Forteo are close to 0. At the very worst you could have 24 hours of discomfort. It is more like four hours. But then you can reassess and quit the drug.
On the other side of the scale is the risk of fracture. We are most susceptible in the spine. You may already know that spinal compression fractures never heal to their original shape. This change in shape can affect the function of your entire spine, providing endless pain.
The other drugs weigh heavier in possible side effects in this order Tymlos, Reclast. oral bisphosphonates, Evenity and then Prolia.
There is some interesting research. Someday we may not have to make these difficult choices.
It would be a tough choice for me if it weren't for Forteo. For very few, the choice of some of the medications has proven to be not worth the side effects.
Bless your choice with luck.
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4 ReactionsThe way Dr. McCormick put it is that Tymlos or Forteo buys you time. Or, as you put it, where would you rather be in two years? At that time, then we can figure out what is next. There's no 20-year grand plan, sadly.
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2 ReactionsThe lack of a grand plan does bother me, but I am so grateful to have an anabolic medication available. Reading all the personal accounts of people with bone fractures here and elsewhere really scared me. I actually feel pretty optimistic about this treatment regime coupled with good lifestyle habits. At least I am taking all the action that I can.
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1 Reaction@gently this is super helpful. Thank you!
@gently, I’ve been thinking of Tymlos and Forteo as more or less interchangeable. Would love to learn more about the lower risk you mention with Forteo vs Tymlos. Can you suggest any reading or studies? Thanks!
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1 Reaction@gently I'm very curious if you have any references for the research that you describe here: "From the research we understand that these two anabolics lessen in effect after 15 month in most patients in clinical trials. " I called Radius to ask about the research findings from 18-24 months and the only information they provide is a study that treated with Tymlos for 18 months, followed by 6 months of alendronate. I'd be very grateful to see research on bone markers in the 18-24 month period.
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1 Reactionmint, https://pmc.ncbi.nlm.nih.gov/articles/PMC6422956/
There is a subset of individuals who continue to maintain coupled bone markers longer than 24 months. Most of the studies are just to 18 months where you see at somewhere approaching 18 month there is this increase in CTX without the accompanying P1NP. If you are wondering about staying on Tymlos longer than 18 months, it is best to have you bone markers tested. There are doctors prescribing longer terms of treatment with both Forteo and Tymlos. I'm starting my fourth year of Forteo, checking serum bone markers every three months.
Research isn't telling us yet why the balance changes. Maybe resource depletion. We don't even know it the shift is transient. And if a person were to continue the medication after the decline we don't know if it would rise again. The pth drugs have my favored mechanism, so I'd like to remain on Forteo or Tymlos and avoid all the others.
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1 Reaction@gently Thank you for the information. That's very interesting.
I did find a research article on the effectiveness of treatment up to 24 months.
In case anyone is interested, the title is "Teriparatide for osteoporosis: importance of the full course" https://pmc.ncbi.nlm.nih.gov/articles/PMC4947115/
The conclusion is: "Both the biochemical and histological data suggest ongoing bone formation through 24 months, resulting in increases in bone mass, even in patients with low bone turnover induced by long-term previous anti-resorptive treatment. Consistent with these observations, bone mass and strength increase and fracture risk decreases during longer treatment with the drug."
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1 Reaction@mint Personally, I had excellent gains in my first year on Tymlos, but modest gains after that. I stopped after 22 months and began alendronate.