Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

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.

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

@ann707

Chris how long did it take for the pain in your joints to alleviate after Prolia injection?

Jump to this post

Good evening @ann707, let me see if I can answer your question. I kept a calendar that permitted me to designate when the joint pain started and wound down. I will see if I can find it. In case I can't do that (I am not a good organizer according to friends and family) I will tell you that the pain ramped up for about three days and took another five or six days to go away.

Are you having Prolia injections now?

Chris

REPLY

Hello everyone. I am Tammy 60yrs old. My osteoporosis journey began on the assembly line 10yrs ago. But due to the doctors finding severe osteoporosis. The repetitive motion was fracturing me but of course the company ruled it was not work related. I have had 9 vertebrae fractures and 3 ribs. I have done 2yrs of Forteo. No improvement. 5yrs of Reclast. No improvement. I have been on Prolia for a year. My pain has increased 1000%. Now my doctor wants me to try Evinity. She is seeing if my insurance will cover it?. Other than my bones being brittle. I am healthy. But worried about the heart issues with Evinity.

REPLY
@momof3gmaof15

Hello everyone. I am Tammy 60yrs old. My osteoporosis journey began on the assembly line 10yrs ago. But due to the doctors finding severe osteoporosis. The repetitive motion was fracturing me but of course the company ruled it was not work related. I have had 9 vertebrae fractures and 3 ribs. I have done 2yrs of Forteo. No improvement. 5yrs of Reclast. No improvement. I have been on Prolia for a year. My pain has increased 1000%. Now my doctor wants me to try Evinity. She is seeing if my insurance will cover it?. Other than my bones being brittle. I am healthy. But worried about the heart issues with Evinity.

Jump to this post

The reviews that I've read about Evenity would suggest that the success rate would be be no better than what you've experienced with other treatments

REPLY
@momof3gmaof15

Hello everyone. I am Tammy 60yrs old. My osteoporosis journey began on the assembly line 10yrs ago. But due to the doctors finding severe osteoporosis. The repetitive motion was fracturing me but of course the company ruled it was not work related. I have had 9 vertebrae fractures and 3 ribs. I have done 2yrs of Forteo. No improvement. 5yrs of Reclast. No improvement. I have been on Prolia for a year. My pain has increased 1000%. Now my doctor wants me to try Evinity. She is seeing if my insurance will cover it?. Other than my bones being brittle. I am healthy. But worried about the heart issues with Evinity.

Jump to this post

So sorry to hear about your fractures. I would encourage you to follow the " My Experience on Evenity for treating Osteoporosis" blog with the Mayo clinic. There is so much support and things to consider if you are thinking of taking Evenity. I also have tried multiple medications in the past with no results and took a 6 year break from all medications. I am 61 years old, diagnosed at age 50. I have taken 2 doses of Evenity. If you have heart issues I would recommend you see a Cardiologist and have them discuss the pros/cons of taking this medication. There are quite a lot of side effects unfortunately with this medicine. I have been lucky and only have had minor ones, others of this site have not been so lucky. Good luck to you and your journey.

REPLY
@momof3gmaof15

Hello everyone. I am Tammy 60yrs old. My osteoporosis journey began on the assembly line 10yrs ago. But due to the doctors finding severe osteoporosis. The repetitive motion was fracturing me but of course the company ruled it was not work related. I have had 9 vertebrae fractures and 3 ribs. I have done 2yrs of Forteo. No improvement. 5yrs of Reclast. No improvement. I have been on Prolia for a year. My pain has increased 1000%. Now my doctor wants me to try Evinity. She is seeing if my insurance will cover it?. Other than my bones being brittle. I am healthy. But worried about the heart issues with Evinity.

Jump to this post

Tammy, have the docs explored what are factors that brought about your OP and are interfering with your improvements? When there are secondary factors, it opens the door for intervening in those forces that are tearing down your bones. The primary cause of female OP is menopause--loss of estrogen. I am sorry you are beset by all these fractures. The down time from exercise sets up a cascade of weakening bones that would otherwise benefit from forces you exert upon them. The drugs can't do the work alone. I hope you can get the docs to explore what is causing this.

REPLY
@dk68

Tammy, have the docs explored what are factors that brought about your OP and are interfering with your improvements? When there are secondary factors, it opens the door for intervening in those forces that are tearing down your bones. The primary cause of female OP is menopause--loss of estrogen. I am sorry you are beset by all these fractures. The down time from exercise sets up a cascade of weakening bones that would otherwise benefit from forces you exert upon them. The drugs can't do the work alone. I hope you can get the docs to explore what is causing this.

Jump to this post

They have checked me for so many things. Nothing ever came of it?

REPLY
@momof3gmaof15

Hello everyone. I am Tammy 60yrs old. My osteoporosis journey began on the assembly line 10yrs ago. But due to the doctors finding severe osteoporosis. The repetitive motion was fracturing me but of course the company ruled it was not work related. I have had 9 vertebrae fractures and 3 ribs. I have done 2yrs of Forteo. No improvement. 5yrs of Reclast. No improvement. I have been on Prolia for a year. My pain has increased 1000%. Now my doctor wants me to try Evinity. She is seeing if my insurance will cover it?. Other than my bones being brittle. I am healthy. But worried about the heart issues with Evinity.

Jump to this post

Hi @momof3gmaof15, I moved your questions about Evenity to this existing discussion:
- Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

I did this so you can easily connect with others talking about Evenity. There are many discussions about Evenity. If you type Evenity into the Search field at the top of the website, you'll find a wide variety of topics.

For example, this is the discussion that @pedsnurse61 recommended:
- My Experience on Evenity for Treating Osteoporosis https://connect.mayoclinic.org/discussion/evenity/

Like @dk68, I wonder if there are other underlying causes that are preventing you from having success with medications. You mention doctors - plural. Have you had a second opinion with an endocrinologist?

REPLY

After conferring with my health care providers, 2 of whom enthusiastically endorsed the use of Evenity while the other 2 said its use is not contraindicated by my health issues, I am still undecided. The possible adverse effects terrify me. I know that it is those with bad experiences who often leave reviews but there is a commonality in the reviews on drugs. com. I sometimes have unusual reactions to medications compounding my dilemma. I might be more willing to try it if I could take a half dose the first time. The fracture and fragulity clinic will not consider that. One doctor reminded me that I could always say Stop after the first of the two injections. I would prefer not having to resort to deceit. Not a good way to start a long term relationship.

I am also not clear on whether it is necessary to start a lifetime of Reckast infusions after Evenity or is that based on need? Patients need a clear understanding of what they are undertaking.

REPLY

I’m currently on Tymlos - no problems with that. Was on Forteo a few years ago and that went well, too. The Forteo did improve my bone density.
When I finish the Tymlos next month, I’m going on Evenity.
I have been worrying about the side effects, but this site has made me feel better.
I will post again after my first injection. Wish me luck!

REPLY
@susanfalcon52

I’m currently on Tymlos - no problems with that. Was on Forteo a few years ago and that went well, too. The Forteo did improve my bone density.
When I finish the Tymlos next month, I’m going on Evenity.
I have been worrying about the side effects, but this site has made me feel better.
I will post again after my first injection. Wish me luck!

Jump to this post

Good luck. Waiting for ur reviews 🙂

REPLY
Please sign in or register to post a reply.