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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Profile picture for hollygs @hollygs

I saw Dr Lane who is in the department of orthopedic surgery and metabolic bone disease division. (I was originally referred to him as I had severe bone marrow edema in my foot.) He was the one who prescribed Evenity followed by Tymlos.

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@hollygs Hello - I have 14 months none recovering bone edema in my foot. I went from super active 45 to only leave home for medical appoint. I have osteoporosis have been on forteo 5 months hasn't helped. Did you edema go away in your feet?

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Profile picture for arlingtonmom @arlingtonmom

@hollygs Hello - I have 14 months none recovering bone edema in my foot. I went from super active 45 to only leave home for medical appoint. I have osteoporosis have been on forteo 5 months hasn't helped. Did you edema go away in your feet?

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@arlingtonmom Hi. Yes, the bone marrow edema in my foot resolved over time. It's still not back to normal, but I'm working on it! I had fractures in one foot from the bone marrow edema and I also ended up with a fractured vertebrae that happened when I was asleep, so I was stuck in bed for ages. I can't say that the osteoporosis medications I was on helped with that issue, but I just don't know. PT and exercising have been very helpful once I was able to do those.
Best wishes to you moving forward!

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Profile picture for hollygs @hollygs

@arlingtonmom Hi. Yes, the bone marrow edema in my foot resolved over time. It's still not back to normal, but I'm working on it! I had fractures in one foot from the bone marrow edema and I also ended up with a fractured vertebrae that happened when I was asleep, so I was stuck in bed for ages. I can't say that the osteoporosis medications I was on helped with that issue, but I just don't know. PT and exercising have been very helpful once I was able to do those.
Best wishes to you moving forward!

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@hollygs wow that is so scary. How did you get your feet to heal? I feel like I’ve tried everything. Been on forteo 6 months just started HRT.

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Profile picture for hollygs @hollygs

I saw Dr Lane who is in the department of orthopedic surgery and metabolic bone disease division. (I was originally referred to him as I had severe bone marrow edema in my foot.) He was the one who prescribed Evenity followed by Tymlos.

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@hollygs
thanks for name dropping Dr. Lane. I've found interesting articles under his publications.

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Profile picture for arlingtonmom @arlingtonmom

@hollygs wow that is so scary. How did you get your feet to heal? I feel like I’ve tried everything. Been on forteo 6 months just started HRT.

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@arlingtonmom Did your doctor tell you that osteoporosis caused your bone marrow edema? I had several conditions that could have contributed to mine, including an autoimmune disorder. PT taught me how to safely do isometric exercises in bed, and I used a cane for about a year. I eliminated all stress and focused on relaxing and healing. I was initially on Evenity and I had good gains from that.

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Profile picture for gently @gently

@hollygs
thanks for name dropping Dr. Lane. I've found interesting articles under his publications.

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@gently I'm glad you found interesting articles - I have as well. Seeing him was a great experience as he would do grand rounds in the office setting, so I was privy to a lot of information that I wouldn't normally be exposed to.

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Profile picture for hollygs @hollygs

@arlingtonmom Did your doctor tell you that osteoporosis caused your bone marrow edema? I had several conditions that could have contributed to mine, including an autoimmune disorder. PT taught me how to safely do isometric exercises in bed, and I used a cane for about a year. I eliminated all stress and focused on relaxing and healing. I was initially on Evenity and I had good gains from that.

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@hollygs my doctors don't know what caused it. they assume osteoporosis is a contributing factor. I also have autoimmune and got back on Humira last month. how did you know edema was gone?

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Profile picture for hollygs @hollygs

@arlingtonmom Did your doctor tell you that osteoporosis caused your bone marrow edema? I had several conditions that could have contributed to mine, including an autoimmune disorder. PT taught me how to safely do isometric exercises in bed, and I used a cane for about a year. I eliminated all stress and focused on relaxing and healing. I was initially on Evenity and I had good gains from that.

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@hollygs
What did you do after Evenity?

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Profile picture for grammy9 @grammy9

@hollygs
What did you do after Evenity?

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@grammy9 After Evenity I did one year of Tymlos and then had my first Reclast infusion in May 2025.

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Profile picture for arlingtonmom @arlingtonmom

@hollygs my doctors don't know what caused it. they assume osteoporosis is a contributing factor. I also have autoimmune and got back on Humira last month. how did you know edema was gone?

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@arlingtonmom The swelling in my affected foot and ankle visibly diminished, and I also had imaging done that showed the bones and surrounding tissues were returning to normal.

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