Prescribed Tymlos after Evenity

Posted by hollygs @hollygs, 1 day ago

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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@hollygs

@windyshores Thank you so much for your reply. To answer your question, changing my insurance plan won't help as the doctor who prescribed Tymlos doesn't take Medicare at all. I will contact his office today to find out what private pay will cost. I can also contact the infusion center where I received Evenity as they accept my insurance and find out if any of their affiliated doctors are familiar with using Tymlos after Evenity. The concern regarding doing so is that patients will have an increased risk of osteonecrosis/osteosarcoma, but that is conjecture as there aren't any studies available. I will certainly let you know what I find out!

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@hollygs I was curious about the rules around doctor’s not taking Medicare as I am on Medicare, too. Looks like your doctor will have to create a contract with you before providing services that says neither of you will bill Medicare, if he opted out of providing Medicare reimbursed services.

Here’s a good link explaining it all. This site provides directives for the doctor, telling them what they can or cannot do.

You have to scroll down the web page to find the section on Opt Out Of Medicare.
https://www.cms.gov/medicare/enrollment-renewal/providers-suppliers/chain-ownership-system-pecos/manage-your-enrollment#:~:text=Physicians%20and%20practitioners%20who%20see,the%20CMS%20Opt%2DOut%20Dataset

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@hollygs

@windyshores Thank you so much for your reply. To answer your question, changing my insurance plan won't help as the doctor who prescribed Tymlos doesn't take Medicare at all. I will contact his office today to find out what private pay will cost. I can also contact the infusion center where I received Evenity as they accept my insurance and find out if any of their affiliated doctors are familiar with using Tymlos after Evenity. The concern regarding doing so is that patients will have an increased risk of osteonecrosis/osteosarcoma, but that is conjecture as there aren't any studies available. I will certainly let you know what I find out!

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hollygs, I wonder if the (we have to say dilligent) doctor who worried about Tymlos after Evenity would be assuaged by information that the black box warning against Tymlos and osteosarcoma has been removed.
Tymlos is prescribed to aid in the recovery from osteonecrosis.

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@windyshores

@gently I have never heard that Tymlos "depletes sclerostin." That is important information when thinking about a sequence either way. Can you share a source?

All I know about Tymlos is:
Tymlos (abaloparatide) is a man-made version of a protein related to the human parathyroid hormone (also called parathyrin). Parathyrin is important in bone remodeling where bone tissue is resorbed...

Since Evenity takes time to mineralize (my doc's words) my doctor said I could wait two months (but no longer) before starting Reclast. The same might be true for Tymlos.

We need more research quickly but with Evenity on the market only 5 years or so, it is going to take time. Initially doctors didn't even know that it's anabolic effect was short-lived.

I did Evenity for only 4 months. There are studies I have seen that test doing short bursts of Evenity between other drugs, and also doing Reclast at the 6 month point on Evenity because at that point Evenity, like Reclast, is anti-resorptive.

@hollygs I have not seen or heard of any increase in risk of osteosarcoma with a combination of Tymlos and Evenity, going in either direction. The risk with Tymlos and Forteo has not proven to be valid. Risk of osteosarcoma has not come up with Evenity, to my knowledge. So I am curious why a sequence of these would raise risk- regardless of which comes first.

As for osteonecrosis, Tymlos does not contribute to that since it is not anti-resorptive. Evenity is anti-resorptive for the last months but mildly so. So not sure where that concern comes from either. If you have heard this, I would love any information.

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@windyshores The endo who is concerned about the Evenity - - >Tymlos sequence is extremely conservative in his approach and apparently not comfortable with expanding his knowledge base. I suggested that he contact the doctor who prescribed Evenity and Tymlos (who is amenable to discussing his protocols) and he declined. His concern is based on extrapolating from his beliefs about both Evenity and Tymlos.

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@gently

hollygs, I wonder if the (we have to say dilligent) doctor who worried about Tymlos after Evenity would be assuaged by information that the black box warning against Tymlos and osteosarcoma has been removed.
Tymlos is prescribed to aid in the recovery from osteonecrosis.

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@gently He has not ever demonstrated any interest in what I have told him, and also declines conferring with the doctor who has prescribed Evenity - - >Tymlos. Luckily, all I expected to achieve from my appointment was to have my lab work drawn.

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hollygs, you're really good at "winging it."

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@gently Thank you. I somehow find that extraordinarily comforting. You're very good at discerning what would be helpful. That's quite a gift.

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@hollygs I got a study from @gently recently that showed amazing gains with Tymlos and Evenity together- so the sequence should be fine. Interesting that there is a study on the combination but I still haven't seen one with Evenity first then Tymlos.

That doctor has some outdated information on osteosarcoma as well as wrong info on the dangers of necrosis with these two drugs. Frustrating for you!

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@windyshores

@hollygs I got a study from @gently recently that showed amazing gains with Tymlos and Evenity together- so the sequence should be fine. Interesting that there is a study on the combination but I still haven't seen one with Evenity first then Tymlos.

That doctor has some outdated information on osteosarcoma as well as wrong info on the dangers of necrosis with these two drugs. Frustrating for you!

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@windyshores The medical consultants at both Amgen and Radius told me that the Evenity - - >Tymlos studies have not yet been developed because Tymlos was released prior to Evenity. Undoubtedly those studies are forthcoming.
Yes, that doctor is relying on outdated information. Luckily I'm not relying on him!

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@hollygs

@gently He has not ever demonstrated any interest in what I have told him, and also declines conferring with the doctor who has prescribed Evenity - - >Tymlos. Luckily, all I expected to achieve from my appointment was to have my lab work drawn.

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If you had bone turnover markers done prior to the start of tymlos as a "baseline", hope you could get them done again to see any anabolic signals from tymlos. If not, don't sweat on this since one year therapy is right around the corner and your dxa could confirm the effectiveness of tymlos.

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@windyshores

@hollygs I got a study from @gently recently that showed amazing gains with Tymlos and Evenity together- so the sequence should be fine. Interesting that there is a study on the combination but I still haven't seen one with Evenity first then Tymlos.

That doctor has some outdated information on osteosarcoma as well as wrong info on the dangers of necrosis with these two drugs. Frustrating for you!

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windyshores, this study was with rats.

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