Prescribed Tymlos after Evenity

Posted by hollygs @hollygs, Nov 17, 2024

I completed a one year course of Evenity in September 2023. I switched endocrinologists afterwards, and he prescribed Fosamax after a brief discussion. I contacted the doctor who had prescribed Evenity, and he advised that I come to the office. He prescribed Tymlos, which I have now been on for 8 months. I changed my medical insurance to Medicare, and the doctor who prescribed both Evenity and Tymlos doesn't take it. I went back to the doctor who prescribed Fosamax after Evenity and he freaked out and said Tymlos is NEVER given after Evenity. His colleague in the same office concurred. He then ordered Prolia. I contacted the manufacturers of both Evenity and Tymlos, and they were very considerate and informed me that to their knowledge, there have been no studies about using Tymlos after Evenity. I am currently on a wait list for a new endocrinologist. I have a history of vertebral fractures and I need dental work, and I don't want to be on Prolia. I can finish the remaining months of Tymlos, or switch to Fosamax and wait and see what the new endocrinologist recommends. Needless to say, the situation is not ideal as I'm winging it. That being said, I know that treatment for osteoporosis is complicated and we patients have to be our own advocates and do a lot of research. I'm not opposed to that, but I'm not finding any information for protocols that have a progression of Evenity to Tymlos and then? If anyone has any information to share, I'd really appreciate it.

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@laujodrik

I’m not rich, but too rich to go on assistance. I can handle the cost. I heard that Forteo has a genetic now. When I checked online the Tymlos would be close to $3,000 a month and the Forto was $600 with GoodRx. It’s going to be a bit of a struggle considering I am retired. Thank goodness I was a saver. I owned a travel agency. I don’t have a choice and without a bone density meds I’ll start breaking bones. I will ask my dr if I can start on a lower amount for now. When I get anxious my heart rate goes up and I heard with these meds they go up too.

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@laujodrik You're doing your best, and it's good enough! I understand your fear, but I assure you that it's possible to let that go. Once you do, you will feel exponentially better and make better decisions. Also, please remember that there are many, many positives here. Sure, there are potential issues and side effects for every medication, but I'll remind you that there are also potentially so many incredible benefits for those of us here. As far as the sequencing goes, no one has nailed that yet. There are so many variables that make establishing a protocol extraordinarily challenging. The science is ever-evolving. New medications are added to the formulary. Different specialists have different opinions. Additionally, we can't always have the supposed optimum timing or the supposed ideal sequence or the supposed ideal medication. Finances, comorbidities, difficulty finding the right doctor at the right time and the list goes on. This is the current landscape for us and we have to learn to navigate it without getting lost or losing our minds. We do our best to advocate for ourselves and educate ourselves, we move forward and live our lives and together we will impact the evolution of osteoporosis treatment.

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@hollygs

@laujodrik You're doing your best, and it's good enough! I understand your fear, but I assure you that it's possible to let that go. Once you do, you will feel exponentially better and make better decisions. Also, please remember that there are many, many positives here. Sure, there are potential issues and side effects for every medication, but I'll remind you that there are also potentially so many incredible benefits for those of us here. As far as the sequencing goes, no one has nailed that yet. There are so many variables that make establishing a protocol extraordinarily challenging. The science is ever-evolving. New medications are added to the formulary. Different specialists have different opinions. Additionally, we can't always have the supposed optimum timing or the supposed ideal sequence or the supposed ideal medication. Finances, comorbidities, difficulty finding the right doctor at the right time and the list goes on. This is the current landscape for us and we have to learn to navigate it without getting lost or losing our minds. We do our best to advocate for ourselves and educate ourselves, we move forward and live our lives and together we will impact the evolution of osteoporosis treatment.

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Thank you for your positive response. I needed that. I’m not a big fan of drugs. I know there are many benefits, as well as side effects. I’m going to try to look on the positive side and move forward. This website has helped me in so many ways. I really appreciate everyone’s response to my questions/fears.

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@hollygs, if you need dental work, I'd be reluctant to go on Fosamax or Prolix, personally. My endocrinologist told me that you can go on Tymlos after Evenity but it's less effective. I'm rather surprised that those doctors don't take Medicare!

Good luck with all you are dealing with! Hope you get some answers.

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@gently

@hollygs,
Antisclerostin antibodies (Evenity) and abloparatide (Tymlos) can have an additive effect. Evenity blocks sclerostin. Tymlos depletes sclerostin using it to produce the cells that build bone. This unproven caution about is why you might not want to take Tymlos while Evenity is still active in your system. Evenity is thought to be gone from your system within 64 days after your last injection. So:
The unexamined question about Tymlos after Evenity no longer applies in your situation.
In my opinion you could be best served by continuing to take Tymlos for the remaining 4 months. Then I would want a second year of Tymlos.
I don't have experience with either medication.
Prolia and Fosamax can put your dental work at risk for osteonecrosis. Tymlos will protect your jaw bone and speed healing.
Your situation is actually ideal. You are safe now with the Tymlos and you have 4 months to find an endocrinologist who will prescribe a second year. Best wishes

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Wow. That’s a lot of information

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@gently I did not realize this: Tymlos depletes sclerostin using it to produce the cells that build bone. Can you provide more info? And I wonder what this means for those of use who took Evenity after Tymlos.

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@laujodrik

Thank you for your positive response. I needed that. I’m not a big fan of drugs. I know there are many benefits, as well as side effects. I’m going to try to look on the positive side and move forward. This website has helped me in so many ways. I really appreciate everyone’s response to my questions/fears.

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@laujodrik I'm so glad that you felt my response was positive. I'm not a fan of drugs either, but they're the lesser of two evils for me. I was out of commission for a year due to fractures and I'd prefer not to go through that again so here we are! Best wishes to you moving forward.

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@mary1951

@hollygs, if you need dental work, I'd be reluctant to go on Fosamax or Prolix, personally. My endocrinologist told me that you can go on Tymlos after Evenity but it's less effective. I'm rather surprised that those doctors don't take Medicare!

Good luck with all you are dealing with! Hope you get some answers.

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@mary1951 Thank you so much for your reply, I really appreciate it. I'm still on Tymlos, so I'll finish my dental treatment and do my DEXA in March and see where that leads us. Best wishes to you.

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@windyshores

@gently I did not realize this: Tymlos depletes sclerostin using it to produce the cells that build bone. Can you provide more info? And I wonder what this means for those of use who took Evenity after Tymlos.

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In my post above on Tymlos and sclerostin, addressed to @gently, this is a quote from @gently: "Tymlos depletes sclerostin using it to produce the cells that build bone." I neglected to indicate a quote late last night!

I am very curious about this. How does a parathyroid hormone affect sclerostin?

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@hollygs

@laujodrik I'm so glad that you felt my response was positive. I'm not a fan of drugs either, but they're the lesser of two evils for me. I was out of commission for a year due to fractures and I'd prefer not to go through that again so here we are! Best wishes to you moving forward.

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I will post how I’m doing and what I’ve decided to do. I don’t feel like I have a choice and will go with what is best for me and try not to think of the what ifs. I’ve had some anxiety looking forward. I also am so thankful for everyone’s support and knowledge. It has given me hope for the future. I’m happy you’re doing better. My biggest fear are the fractures and ending up with major disabilities.

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@mary1951

@hollygs, if you need dental work, I'd be reluctant to go on Fosamax or Prolix, personally. My endocrinologist told me that you can go on Tymlos after Evenity but it's less effective. I'm rather surprised that those doctors don't take Medicare!

Good luck with all you are dealing with! Hope you get some answers.

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Holly you mentioned you had fractures. I’m curious did you stop the meds or hope with proper care your osteoporosis would get better. I lift weights and try to walk everyday. I’ve heard after getting off Prolia nothing will work unless you go back on some sort of meds. My osteoporosis wasn’t terrible -2.8 when I started Prolia and sometimes I wish I never started. A lot of my friends never had a reaction so I figured I would do something. I’m 78 now and thin, and pretty much in shape. I guess we can’t look back.

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