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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@hollygs

@gently, @windyshores, @mayblin, I'm now able to update how the Evenity - - >Tymlos sequence has worked for me thus far. After one year of Evenity followed by four months of Fosamax, I will complete one year of Tymlos on 3/15/25. I had my DEXA and TBS yesterday (3/10/25). DEXA results indicate no apparent changes currently except for in my R femoral neck which went from -3.2 to -3.8, and my TBS went from 1.359 to 1.370. My new doctor was planning on starting me on Prolia for two years, followed by Reclast. I will meet with her tomorrow, and was thinking I would press for continuing Tymlos for another year, but at this juncture I don't know if that's the best option. I don't want to go on Prolia. To be honest, I have multiple comorbidities that have made the past year very challenging and I'm exhausted. I don't know if Tymlos has contributed to that, but I'm looking forward to finding out over the next month of being off it! I will discuss all of this with my doctor, but I don't know what to ask for. If you have any suggestions for me, I'd really appreciate your input.

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hollygs,
I'd go for another year of Tymlos. The TBS increase makes me suspect that the next year will yield greater bone mineral density. The right femoral neck is concerning. There is sense to be made of it from the type of bone that Evenity produces. And from the important canaliculation that Tymlos initiates.
Fatigue is one of the common side effects of Tymlos. I speculate the fatigue results because the dosage is too high-- probably not a good subject for conversation with your physician tomorrow. Most are so opposed to lowering the dose. Elevated calcium can also cause fatigue. Part of the mechanism of action for Tymlos is to increase serum calcium briefly. But in some people it can cause sustained calcium elevation.
I would ask for serum lab orders. P1NP and CTX, calcium, d and pth.
Thanks for posting the Evenity to Tymlos results. Very helpful.
Post us how your appointment goes.

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@hollygs

@gently, @windyshores, @mayblin, I'm now able to update how the Evenity - - >Tymlos sequence has worked for me thus far. After one year of Evenity followed by four months of Fosamax, I will complete one year of Tymlos on 3/15/25. I had my DEXA and TBS yesterday (3/10/25). DEXA results indicate no apparent changes currently except for in my R femoral neck which went from -3.2 to -3.8, and my TBS went from 1.359 to 1.370. My new doctor was planning on starting me on Prolia for two years, followed by Reclast. I will meet with her tomorrow, and was thinking I would press for continuing Tymlos for another year, but at this juncture I don't know if that's the best option. I don't want to go on Prolia. To be honest, I have multiple comorbidities that have made the past year very challenging and I'm exhausted. I don't know if Tymlos has contributed to that, but I'm looking forward to finding out over the next month of being off it! I will discuss all of this with my doctor, but I don't know what to ask for. If you have any suggestions for me, I'd really appreciate your input.

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@hollygs thanks a lot for the updates! Great TBS score btw! You are among the very few exploring this evenity -> tymlos sequence. The information you provided could be very useful to some of us.

The fosamax you took could delay tymlos' effects for a few months or dampen its effect somewhat. If you had bone markers tested, they may give you a clue.

Was there a discordance in T scores at left and right femur neck from your previous dxa? The one-sided femur neck decrease in bmd is puzzling. It makes one wonder if it was a scan error, or due to a biological reason, or if it is an existing discordance becoming more prominent.

The choice between prolia and reclast is very personal. Some endos use it to further bmd gains before locking in with reclast. If baseline CTX (prior to any osteodrug treatment) is low-ish, I'd definitely avoid prolia if I were you. We know one either stays on it or relays to reclast/fosamax, which may result in ctx over suppression in degree and length. With a bisphosphonate, one can at least take drug holidays when needed. If one has comobidities with reduced immunity, prolia is a concern too. The easier and less complicated one seems to be reclast or an oral bisphosphonate. When needed in the future, you can always use an anabolic again after bisphosphonate (+/- drug holiday).

I'm keen to learn what you and your endo decide. Best luck to you!

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@gently

hollygs,
I'd go for another year of Tymlos. The TBS increase makes me suspect that the next year will yield greater bone mineral density. The right femoral neck is concerning. There is sense to be made of it from the type of bone that Evenity produces. And from the important canaliculation that Tymlos initiates.
Fatigue is one of the common side effects of Tymlos. I speculate the fatigue results because the dosage is too high-- probably not a good subject for conversation with your physician tomorrow. Most are so opposed to lowering the dose. Elevated calcium can also cause fatigue. Part of the mechanism of action for Tymlos is to increase serum calcium briefly. But in some people it can cause sustained calcium elevation.
I would ask for serum lab orders. P1NP and CTX, calcium, d and pth.
Thanks for posting the Evenity to Tymlos results. Very helpful.
Post us how your appointment goes.

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@gently Thank you so much for your reply, I really appreciate it. My current labs are all in the normal range, and my doctor has told me she doesn't do bone markers as they're "not reliable". I'll discuss that with her again. There's no way of knowing how much Tymlos is contributing to my fatigue, but I will be off it for a month and that will be enough to gain clarity. It's quite likely that my doctor will stick to wanting to follow up with Prolia, and then I'll be up a creek without a paddle.

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Your trajectory is challenging and one we're all facing. Thank you so much for sharing - this helps all of us a lot. The medical/business world has not performed satisfactorily with regard to osteoporosis - not a particularly new story in our messed-up medical system, to say the least.

How did you fare with Tymlos? Did you achieve satisfactory bone "growth?" Did you experience side effects about which we should be aware? Thanks again for sharing - it's how we can learn on our own, which is basically where we all are in our bone maintenance? Warm regards and all good things... Alex Rose

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@hollygs

Hi @sunny65. I hope you don't mind me chiming in here. First of all, I'm so sorry that you're having such a rough time. I hope you've discussed your pain with your medical team. It would probably be a good idea to consult with a pain management specialist if that hasn't happened yet. If you're concerned about what your treatment plan will be moving forward, it sounds like you might want to reach out to your endo again. I don't know if you saw this whole thread to which you replied, so if not, you can search "Prescribed Tymlos after Evenity." That's my current situation, and I got some great replies. If you have any questions for me, please do feel free to reach out here. Best wishes to you.

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I’m 65. I’m looking for info regarding Evenity after 2 years of Tymlos. I can’t find any studies or info about this course of therapy. I was also told today by an endocrinologist that you can only take a one year course of Evenity in your lifetime. So, do I build more bone now or save this option for Evenity for the future when I’m older and bones might need more strength.

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@nemorose

Your trajectory is challenging and one we're all facing. Thank you so much for sharing - this helps all of us a lot. The medical/business world has not performed satisfactorily with regard to osteoporosis - not a particularly new story in our messed-up medical system, to say the least.

How did you fare with Tymlos? Did you achieve satisfactory bone "growth?" Did you experience side effects about which we should be aware? Thanks again for sharing - it's how we can learn on our own, which is basically where we all are in our bone maintenance? Warm regards and all good things... Alex Rose

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@nemorose Thank you so much for your kind words, they're greatly appreciated. I recently posted an update on my response to Tymlos which you'll find if you scroll back. Basically, my last DEXA demonstrated no improvements and my R femoral neck went from -3.3 to -3.8. My TBS did improve from 1.359 to 1.370. I had some very helpful and informative responses to that update in case you're interested.
Thankfully I had no notable side effects from Tymlos.
Warm regards and all good things to you as well... Holly

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@mdm30

I’m 65. I’m looking for info regarding Evenity after 2 years of Tymlos. I can’t find any studies or info about this course of therapy. I was also told today by an endocrinologist that you can only take a one year course of Evenity in your lifetime. So, do I build more bone now or save this option for Evenity for the future when I’m older and bones might need more strength.

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@mdm30 Hi. I think you'll find a lot of information on this site in regards to the Evenity after Tymlos sequence. You can specifically search for that on this site.
It would be helpful to know when you stopped Tymlos, and if you have been on any other medications for osteoporosis. Has your endocrinologist prescribed Evenity? If you're comfortable doing so, posting your pre- and post-Tymlos DEXA, TBS and bone marker results would be helpful for members to understand what type of information would be most beneficial for you. Evenity has been prescribed for more than one year by some doctors, but at present it is officially approved for one year. Have you discussed what the long-term plan is for you moving forward? It's always good to know why your endocrinologist is recommending a particular treatment plan, what alternatives might be suitable and whether or not a specific medication eliminates the possibility of using certain others in the future.
Hope that helps! Best wishes to you.

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@hollygs

@gently, @windyshores, @mayblin, I'm now able to update how the Evenity - - >Tymlos sequence has worked for me thus far. After one year of Evenity followed by four months of Fosamax, I will complete one year of Tymlos on 3/15/25. I had my DEXA and TBS yesterday (3/10/25). DEXA results indicate no apparent changes currently except for in my R femoral neck which went from -3.2 to -3.8, and my TBS went from 1.359 to 1.370. My new doctor was planning on starting me on Prolia for two years, followed by Reclast. I will meet with her tomorrow, and was thinking I would press for continuing Tymlos for another year, but at this juncture I don't know if that's the best option. I don't want to go on Prolia. To be honest, I have multiple comorbidities that have made the past year very challenging and I'm exhausted. I don't know if Tymlos has contributed to that, but I'm looking forward to finding out over the next month of being off it! I will discuss all of this with my doctor, but I don't know what to ask for. If you have any suggestions for me, I'd really appreciate your input.

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Does anybody ever get off of these meds once you’ve started them?

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@arlene1958

Does anybody ever get off of these meds once you’ve started them?

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@arlene1958 Hi. That's an excellent question! I think it would be great if you asked that question in a separate thread, as you'd get a variety of answers.
As far as I'm concerned, when I started treatment I wasn't aware that I might be on meds for life and that the sequence matters a great deal. I would rather not be on meds, but my DEXA scores aren't good (yet!) and I had a fractured foot, ribs and L2 fracture simultaneously that left me bedridden, in immense pain and terrified. I remain positive that I will continue to improve and eventually will be able to come off the meds. Many people on this site have been on meds for decades, and others want to quit along the way. There are so many factors that may contribute to that: suffering side effects, no improvement in their osteoporosis, prohibitive cost, poor medical care, lack of access to specialists and/or treatment facilities, lack of knowledge - the list could go on. Figuring this all out is very time-consuming and takes a major commitment. Luckily we have this amazing resource, and I hope you're finding it helpful.
Best wishes to you!

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