Anyone taken Evenity (romosozumab) for Osteoporosis?
Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.
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I did a bit of research and I dont think im a good candidate nor would i feel comfortable because of the cancer risks associated with these meds. I am a cancer survivor
@gretch19 I am also a cancer survivor. The warning about cancer with these drugs was lifted. Not a single human has gotten cancer from Forteo or Tymlos and they have been around for awhile.
There is a lot of old info online.
I appreciate the many educated responses with which you have helped people on this forum. In this reply you mention "severe osteoporosis", as have many others. This is an important distinction I believe for making decisions. On DEXA results, what is considered severe? My worse is -3.1 and an orthopedist after surgery said my hip bones were not the worst he has seen.
@vabird that is a really great point and I do try to make that distinction - about severity of osteoporosis- when discussing meds. I am an advocate, through personal experience, of medications for osteoporosis that is significant (better word?), but also feel that people may be medicated too early (mainly because sequencing and time limit issues lead eventually to problems with "what's next"!).
So from what I gather, first, decisions are not just based on DEXA scores. There is also bone quality and some are able to measure that- trabecular bone score is possible with some machines. Second, fracture history is important. Third, I keep a chart of my DEXA's since 2003 and they jump around a bit- less if you use the same machine but still, there are variations.
So with a -3.1 most docs would say that is significant and at that level you also have a chance to get out of osteoporosis. "Severe" would probably be -3.5 and less (according to Dr.McCormick). But then again, -3.1 is kind of borderline. If I had it to go over again, I would try hard to get on Tymlos at that level. I fractured in the mid- -3's.
The problem right now is that insurance tends to require use of Prolia or bisphosphonates first and then the bone builders. There are exceptions with fractures. There is a lot of research going on about the proper order of these meds (see video by Ben Leder on Combinations and Sequencing if you can find it). Much better to do bone builders (Forteo, Tymlos, Evenity) first then bisphosphonates to "lock in" gains. In fact the bone builders are less effective after the first line meds that PCP's prescribe. Hoping insurance policies change!
Many thanks again for your detailed reply.
In my case, I have had no fractures and my DEXA score on the same machine was stable after 6 years. Without being close to one of the few U.S. places that do the bone quality test, I am going by my hip replacement surgeon who said I was definitely not as severe as others he has seen. For many years I have followed the other important things recommended here--appropriate nutrition and appropriate exercise and fall prevention.
I am daily following a lot of the comments and am deeply disturbed by the insurance problem with not starting with bone builders. I also appreciate your reminding those with severe arthritis to seriously consider meds.
@vabird glad you have a reasonable doc and I agree about insurance. I am going to ask my doc this week if any advocacy is happening on that front!
I am in the same boat. I was scheduled to start Evenity on Friday, then started reading reviews and backed out. I have one month to decide whether I take my chances with Evenity or go with prolia which seems safer and has been around longer. My Jackson team scores are all so bad
I am in the same boat. I was scheduled to start Evenity on Friday, then started reading reviews and backed out. I have one month to decide whether I take my chances with Evenity or go with prolia which seems safer and has been around longer. My t scores are also bad
@gretch19 why aren't you considering Tymlos (or Forteo)?
My docs don't even use Prolia, for the most part.
If your scores are bad, Prolia is probably not the best choice. It is made by Amgen, the company that makes Evenity.
Do you see an endocrinologist?
Windyshores, you supply so much useful information. Thank you.
I thought I might contribute just a little more to what you just said. The videos on youtube by Benjamin Leder MD and Felica Cosman MD supply great info on why many of us need to start with anabolics. Here's the links:
https://www.youtube.com/watch?v=WXoz1NeUgg8&t=2932s for the Benjamin Leder one.
https://www.youtube.com/watch?v=yUE30_1JcT8 Felica Cosman on anabolics.
https://www.youtube.com/watch?v=lt6QUm7wgYY&t=2237s another one by Cosman on anabolics.
All of these are within a year or so and cover the latest research and use more reasonable thought processes in my opinion.