1. < Osteoporosis & Bone Health

Evenity after Forteo or Tymlos?

Posted by windyshores @windyshores, Apr 27, 2023

I would love to hear from anyone who followed Forteo or Tymlos with Evenity. My endocrinologist does not seem to know about this possibility, or perhaps he is bound by studied protocols. I would like to share any studies with him, as well as personal experiences on this forum. He is a great doc so not really questioning him, but he also listens to me and what I want.

I am finishing 18 months of Tymlos (partial dose) with gains so good they are hard to believe- almost 20% for spine and almost 9% for hip. Doc wants to do a "test dose" of Reclast at 1 mg (usual dose is 5 mg). That lasts 3 months and after one month I am to tell him what dose I want next, depending on how I tolerate the 1 mg: I can have 3mg, 4 mg, whatever I want to request. I will be monitored over the next years and able to take a break if things look good.

The thing is, my hip is still at -2.9 and my spine at -2.5 so I wonder if a year of Evenity would get me to osteopenia. To be honest, I am pretty happy with my results ( previous scores were -3.7 at spine and -3.3 at hip, with several spinal fractures). Maybe Reclast will be good enough.

Let me know if you are doing Evenity after an anabolic, via PM or on this thread. Thank you!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

susanfalcon52 | @susanfalcon52 | Jul 3, 2023
In reply to @windyshores "My endocrinologist, chair of endo at a major hospital in MA, won't prescribe Evenity after Tymlos..." + (show)
@windyshores

My endocrinologist, chair of endo at a major hospital in MA, won't prescribe Evenity after Tymlos because there is "no data as yet." I got a second opinion two days ago, with the same response. I was told research is being done on that sequence.

I responded that I was afraid that if I do Reclast after Tymlos, and do Evenity later, that effectiveness will be less due to the Reclast. Doc said no, and that saving Evenity for later was a good idea. Of course the two year limit has been lifted for Forteo, not sure about Tymlos but it will be if not already. I also would like better scores before "locking in."

So many on this forum are taking Evenity after Tymlos or Forteo. I participated in a masterclass with Dr. Lani Simpson and a patient who had done this and had more gains on the Evenity after doing well on Tymlos.

I am curious how docs are able to prescribe this course of meds elsewhere but not in my area of MA. How are you getting Evenity after Tymlos? I would seriously travel! PM me if that is better. Thanks!

Jump to this post

I think docs could prescribe Evenity anywhere. There may be a ‘movement’ in your area, lead by prominent physicians, to not prescribe it.

REPLY
windyshores | @windyshores | Jul 3, 2023
In reply to @windyshores "My endocrinologist, chair of endo at a major hospital in MA, won't prescribe Evenity after Tymlos..." + (show)
@windyshores

My endocrinologist, chair of endo at a major hospital in MA, won't prescribe Evenity after Tymlos because there is "no data as yet." I got a second opinion two days ago, with the same response. I was told research is being done on that sequence.

I responded that I was afraid that if I do Reclast after Tymlos, and do Evenity later, that effectiveness will be less due to the Reclast. Doc said no, and that saving Evenity for later was a good idea. Of course the two year limit has been lifted for Forteo, not sure about Tymlos but it will be if not already. I also would like better scores before "locking in."

So many on this forum are taking Evenity after Tymlos or Forteo. I participated in a masterclass with Dr. Lani Simpson and a patient who had done this and had more gains on the Evenity after doing well on Tymlos.

I am curious how docs are able to prescribe this course of meds elsewhere but not in my area of MA. How are you getting Evenity after Tymlos? I would seriously travel! PM me if that is better. Thanks!

Jump to this post

@susanfalcon52 you may be misunderstanding. Of course my docs prescribe Evenity. They are not, however, following Tymlos with Evenity, due to "lack of data." For that reason- lack of data- according to my docs, noone should be prescribing Evenity after Tymlos (or Forteo).

REPLY
1 reply
susanfalcon52 | @susanfalcon52 | Jul 4, 2023
In reply to @windyshores "@susanfalcon52 you may be misunderstanding. Of course my docs prescribe Evenity. They are not, however, following..." + (show)
@windyshores

@susanfalcon52 you may be misunderstanding. Of course my docs prescribe Evenity. They are not, however, following Tymlos with Evenity, due to "lack of data." For that reason- lack of data- according to my docs, noone should be prescribing Evenity after Tymlos (or Forteo).

Jump to this post

Windyshores,
I understood what you meant. I did not make it clear in my post.

REPLY
1 reply
susanfalcon52 | @susanfalcon52 | Jul 5, 2023
In reply to @susanfalcon52 "Windyshores, I understood what you meant. I did not make it clear in my post." + (show)
@susanfalcon52

Windyshores,
I understood what you meant. I did not make it clear in my post.

Jump to this post

Regarding following Tymlos with Evenity, there may not be enough research to make doctors comfortable with that, but I think there is very little research altogether on these drugs.
I have taken Forteo, Tymlos, and now Evenity. I consider every one of them to be radical. Evenity only not that long ago had a black box warning. If someone had told me that I would be flinging myself out into this brave new world of medicine , I wouldn’t have believed them. The decision to take all these new age drugs was ten years in the making and involved a team of physicians who I knew and trusted. Their enthusiasm for the drugs is not based on years of study - it’s based on positive results so far.
I have been fortunate to not suffer any side effects. Of course, it’s possible to have side effects that are not obvious.
I read Dr Lana Simpson’s book years ago and consulted with her before I started the Forteo and the Tymlos. She is pretty even handed about the drugs. She’s all about lifestyle efforts to save bones, but has always said that she herself is open to taking the new drugs.
So, it seems that most of us do enter into this drug treatment regime after a lot of research and consultation.

REPLY
1 reply
windyshores | @windyshores | Jul 5, 2023
In reply to @susanfalcon52 "Regarding following Tymlos with Evenity, there may not be enough research to make doctors comfortable with..." + (show)
@susanfalcon52

Regarding following Tymlos with Evenity, there may not be enough research to make doctors comfortable with that, but I think there is very little research altogether on these drugs.
I have taken Forteo, Tymlos, and now Evenity. I consider every one of them to be radical. Evenity only not that long ago had a black box warning. If someone had told me that I would be flinging myself out into this brave new world of medicine , I wouldn’t have believed them. The decision to take all these new age drugs was ten years in the making and involved a team of physicians who I knew and trusted. Their enthusiasm for the drugs is not based on years of study - it’s based on positive results so far.
I have been fortunate to not suffer any side effects. Of course, it’s possible to have side effects that are not obvious.
I read Dr Lana Simpson’s book years ago and consulted with her before I started the Forteo and the Tymlos. She is pretty even handed about the drugs. She’s all about lifestyle efforts to save bones, but has always said that she herself is open to taking the new drugs.
So, it seems that most of us do enter into this drug treatment regime after a lot of research and consultation.

Jump to this post

Lani Simpson is on Tymlos.

@susanfalcon52 There is plenty of data for all of these drugs, though of course Evenity is newer in actual practice.

The lack of data concerns the sequencing. There is no data as yet for Evenity after Tymlos.

Anecdotally, Evenity does add bone density after Tymlos but studies apparently need to catch up.

I am puzzled as to why so many docs are prescribing this sequence without data. None of the docs around here will prescribe it.

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