Anyone taken Evenity (romosozumab) for Osteoporosis?

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.

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The side effects for every drug, regardless what it's for, always brings about questions of risk versus results. Since I was told that my bones were very brittle and my spine was the worse, it scares me to think of what may happen if I did fall. Stroke and hearrt attacks scare me as well.....so this is my "rock and hard place" too. I know that you can only take Evenity for 1 year, so I hope and pray that my bones improve and then I will need to decide how to maintain bones after that.

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The side effects for every drug, regardless what it's for, always brings about questions of risk versus results. Since I was told that my bones were very brittle and my spine was the worse, it scares me to think of what may happen if I did fall. Stroke and hearrt attacks scare me as well.....so this is my "rock and hard place" too. I know that you can only take Evenity for 1 year, so I hope and pray that my bones improve and then I will need to decide how to maintain bones after that.

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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

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@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!

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I just had my first 2 injections with Evenity for my Osteoporosis so I don’t have much too share. I have noticed that both arms are very sore which is understandable but my concern is insomia. I haven’t slept since my injections. It most likely won’t be the same for all of you sitting on the fence on what drug would be the best. If anyone has had Evenity before with INSOMNIA please reach out too me. Would love too share stories! Is it just “me?”

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Hi, I am almost 5 months into my year on Evenity. I have had chronic insomnia all my life, now treated with Melatonin which helps a lot. Since starting Evenity, if any change, I would say my insomnia is improved ! In fact, I was wondering if the Evenity caused it. Most likely, for both of us, it is unrelated. Good luck!

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Hi, I am almost 5 months into my year on Evenity. I have had chronic insomnia all my life, now treated with Melatonin which helps a lot. Since starting Evenity, if any change, I would say my insomnia is improved ! In fact, I was wondering if the Evenity caused it. Most likely, for both of us, it is unrelated. Good luck!

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Thank you so much for reaching out. I was happy too hear that your insomnia has improved. I wish you the very best with the rest of your treatments.

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@arlene7 Most doctors do prefer for you to get your calcium through foods. There is no way I do that though, I am lactose intolerant. I realize there is calcium in some vegetables but I would not get the 1200 mg a day suggested.
JK

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