Anyone taken Evenity (romosozumab) for Osteoporosis?

I will be in negotiations today Thursday July 13.

I will have limited email access during this time; however, please feel free to leave an email and I will be back to you as soon as I can.
If you need assistance please phone our offices at 518.464.1300 and reach Rayanne@ (rsheehan@rwgmlaw.com) x409.

--_000_edd882aeb4c24ed9bcbf51f126b03e31RWGMEXCH19rwmattyslocal_
Content-Type: text/html; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable

  I will be in negotiations today
Thursday July 13.
 
I will  have limited email access during this time; however, please feel free to leave an email and I will be back to you as soon as I can.
If you need assistance please phone our offices at 518.464.1300 and reach Rayanne@ (rsheehan@rwgmlaw.com) x409.

--_000_edd882aeb4c24ed9bcbf51f126b03e31RWGMEXCH19rwmattyslocal_--

I have pretty severe osteoporosis which I tried to treat naturally (food, nutrients, exercise) but it only got worse. Two docs with whom I consulted strongly advise me to go on Evenity, however I am very nervous about it given the warnings and the short amount of time it has been on the market. The alternative is Prolia, which is also not without risk, however it is milder and I know many people that went on it and had no issues. When I read your story from 2020, it sounded very similar to mine. It sounds like you tolerated Evenity well. Do you have any advice for me?

@gretch19 you could consider Tymlos or Forteo, which build bone. Prolia is not an anabolic bone-builder and there are problems with it because when you stop, there is an abrupt loss of bone density and increase in fracture risk.

I chose Tymlos over Evenity in the first place. You inject with a pen each day and I was able with doc's approval to adjust the dose, starting with a low dose and moving up. This gave me more control over side effects.

I never reached full dose but had amazing gains on Tymlos.

Thank you. Never even heard of that one. I will look into it

@gretch19 Evenity is much newer. I went from severe osteoporosis of my spine to borderline on Tymlos. Many are doing Evenity after Tymlos but you cannot do the other way around, another argument for doing Tymlos first. Forteo and Tymlos are standard meds for severe osteoporosis.

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.