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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 | @hollygs | 4 hours ago
In reply to @mayblin "If you had bone turnover markers done prior to the start of tymlos as a "baseline",..." + (show)
@mayblin

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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@mayblin Thanks. Yes, I had bone markers done prior to starting Tymlos. I'm not going to sweat any of this. I knew from the get-go that this process could continue to be very stressful and that was going to be the worst possible thing for my physical and mental health. There's no way I'm going back to that, and I appreciate that I got a little taste of it last week to remind me to refocus myself and commit to a calm and positive mindset.

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windyshores | @windyshores | 2 hours ago
In reply to @hollygs "@mayblin Thanks. Yes, I had bone markers done prior to starting Tymlos. I'm not going to..." + (show)
@hollygs

@mayblin Thanks. Yes, I had bone markers done prior to starting Tymlos. I'm not going to sweat any of this. I knew from the get-go that this process could continue to be very stressful and that was going to be the worst possible thing for my physical and mental health. There's no way I'm going back to that, and I appreciate that I got a little taste of it last week to remind me to refocus myself and commit to a calm and positive mindset.

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@hollygs you seem to know what you are doing! Hope you can stay on Tymlos. We seem to be forced to do things that aren't completely studied yet (including things studied only in rats!)- if we can find doctors who will help us with that.

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windyshores | @windyshores | 2 hours ago
In reply to @windyshores "@hollygs I got a study from @gently recently that showed amazing gains with Tymlos and Evenity..." + (show)
@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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@gently thanks on the rats! I got carried away by that study because I have been so concerned that my "own protocol" = as two endos put it) of doing Evenity after Tymlos would somehow cancel out my gains on Tymlos. But yes, rat studies are not going to push things forward for us as yet 🙂

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