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.

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@leslie2121

To be clear, I didn't do much but lay around the first few weeks as I was in so much pain! After about a month, I started very slowly with PT. After 8 weeks, I was using weights to add to some of the exercises. It was definitely a slow process but I want to keep it up as much as possible.

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Keep moving that's what we are made for.

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As promised here are my DEXA results after 12 months on EVENITY

AP Spine L1-L4 From -3.3 to - 2.3 Significant improvement from Osteoporosis to Osteopenia
Left Femur Neck From -3.5 to - 3.4
Right Femur Neck From -3.0 to - 2.8
Mean Femur Neck From -3.3 to - 3.1
Dual Femur Total Mean From -3.5 to -2.7 This is also significant.

I am very happy as I had very bad Osteoporosis and had fractured my spine. So my spine #'s are significant
for improvement - From Osteoporosis to Osteopenia.

Now starting Prolia

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@readhead1226

As promised here are my DEXA results after 12 months on EVENITY

AP Spine L1-L4 From -3.3 to - 2.3 Significant improvement from Osteoporosis to Osteopenia
Left Femur Neck From -3.5 to - 3.4
Right Femur Neck From -3.0 to - 2.8
Mean Femur Neck From -3.3 to - 3.1
Dual Femur Total Mean From -3.5 to -2.7 This is also significant.

I am very happy as I had very bad Osteoporosis and had fractured my spine. So my spine #'s are significant
for improvement - From Osteoporosis to Osteopenia.

Now starting Prolia

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Can I ask why Prolia versus other bisphosphonates?

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@callalloo

Can I ask why Prolia versus other bisphosphonates?

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From what I understand this is the protocol with Evenity. They want you to go to Prolia after. Evenity for a year and Prolia for 10 years. Apparently after Evenity you cannot go to certain other drugs. There is more information on this site regarding this from people who know more than I do about the reasons. Apparently they are having success with these 2 drugs.

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@readhead1226

From what I understand this is the protocol with Evenity. They want you to go to Prolia after. Evenity for a year and Prolia for 10 years. Apparently after Evenity you cannot go to certain other drugs. There is more information on this site regarding this from people who know more than I do about the reasons. Apparently they are having success with these 2 drugs.

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Amgen makes both drugs and would, of course, prefer if someone took both of them, but a lot of people are opting not to take Prolia. There are choices other than Prolia and reasons people are taking others.

I hope you read the many threads on Mayo Connect dealing with Prolia as there's a lot of information about peoples' experiences with the drug as it's tricky to get off of in case you need to. It might be the best choice anyway or give you questions to discuss with your doctor.

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@callalloo

Amgen makes both drugs and would, of course, prefer if someone took both of them, but a lot of people are opting not to take Prolia. There are choices other than Prolia and reasons people are taking others.

I hope you read the many threads on Mayo Connect dealing with Prolia as there's a lot of information about peoples' experiences with the drug as it's tricky to get off of in case you need to. It might be the best choice anyway or give you questions to discuss with your doctor.

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From what I understand from my doctor ( Rheumatologist) who is highly respected, after Evenity you cannot go to some of the other drugs. I cannot use Thymos as I am prone to kidney stones and that drug produces them. He has had much success in the Evenity/Prolia combination and yes I know they make both drugs. But it is my understanding that you can lose the gains you have made by using some of the other drugs after Evenity. With some of the other drugs you have more choices but not with Evenity. So Ill assume if some do not want to use Prolia they shouldnt use Evenity prior. This is what I have read here and also elsewhere. I have severe osteoporosis. I have to do what I feel will help me the most. Im 67 and I need to make choices that will benefit me in the short term as I have already had a few compression fractures in my spine and I have had a few broken ribs. So I understand that everyone has a different opinion but I have to trust my doctor who has seen much success over the last few years. Additionally I have a liver disease ( PBC) and drugs are a huge enemy in terms of what I can use and what I cannot.

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@readhead1226

From what I understand this is the protocol with Evenity. They want you to go to Prolia after. Evenity for a year and Prolia for 10 years. Apparently after Evenity you cannot go to certain other drugs. There is more information on this site regarding this from people who know more than I do about the reasons. Apparently they are having success with these 2 drugs.

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The protocol to go on Prolia is because Amgen owns both Evenity and Prolia! I would think long and hard about going on Prolia because you cannot just stop it. My doc uses Reclast after Evenity and with proper monitoring, says we can even take breaks. He is also considering a partial dose of Reclast depending on results.

Go to the Evenity Amgen site and it says to follow up with Prolia. This is not a "protocol." It is a company suggesting their own drug.

If you cannot take biphosphonates, then Prolia is indeed your only choice.

We can take Evenity after Tymlos or Forteo, but not the other way around- at least not yet. This is apparently because Evenity "turbocharges" bone growth so there is little left for Tymlos or Forteo to do. Now, you do maintenance.

I hope you are able to do Reclast, even a partial dose. Drink a lot of water the day before, of and after the infusion, take tylenol and maybe benadryl. Good luck!

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@readhead1226

As promised here are my DEXA results after 12 months on EVENITY

AP Spine L1-L4 From -3.3 to - 2.3 Significant improvement from Osteoporosis to Osteopenia
Left Femur Neck From -3.5 to - 3.4
Right Femur Neck From -3.0 to - 2.8
Mean Femur Neck From -3.3 to - 3.1
Dual Femur Total Mean From -3.5 to -2.7 This is also significant.

I am very happy as I had very bad Osteoporosis and had fractured my spine. So my spine #'s are significant
for improvement - From Osteoporosis to Osteopenia.

Now starting Prolia

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Thank you so much to take the time to share your experience. I think that your last post is the most constructive amongst the 33 pages. In addition it sends a positive message for those who are taking Evenity.
Personally my Dexa is so low (-4,7) that I can’t have high expectations. However you raised my hopes.
Take care

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@windyshores

The protocol to go on Prolia is because Amgen owns both Evenity and Prolia! I would think long and hard about going on Prolia because you cannot just stop it. My doc uses Reclast after Evenity and with proper monitoring, says we can even take breaks. He is also considering a partial dose of Reclast depending on results.

Go to the Evenity Amgen site and it says to follow up with Prolia. This is not a "protocol." It is a company suggesting their own drug.

If you cannot take biphosphonates, then Prolia is indeed your only choice.

We can take Evenity after Tymlos or Forteo, but not the other way around- at least not yet. This is apparently because Evenity "turbocharges" bone growth so there is little left for Tymlos or Forteo to do. Now, you do maintenance.

I hope you are able to do Reclast, even a partial dose. Drink a lot of water the day before, of and after the infusion, take tylenol and maybe benadryl. Good luck!

Jump to this post

My endocrinologist recommends Reclast at end of Evenity.

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@readhead1226

From what I understand from my doctor ( Rheumatologist) who is highly respected, after Evenity you cannot go to some of the other drugs. I cannot use Thymos as I am prone to kidney stones and that drug produces them. He has had much success in the Evenity/Prolia combination and yes I know they make both drugs. But it is my understanding that you can lose the gains you have made by using some of the other drugs after Evenity. With some of the other drugs you have more choices but not with Evenity. So Ill assume if some do not want to use Prolia they shouldnt use Evenity prior. This is what I have read here and also elsewhere. I have severe osteoporosis. I have to do what I feel will help me the most. Im 67 and I need to make choices that will benefit me in the short term as I have already had a few compression fractures in my spine and I have had a few broken ribs. So I understand that everyone has a different opinion but I have to trust my doctor who has seen much success over the last few years. Additionally I have a liver disease ( PBC) and drugs are a huge enemy in terms of what I can use and what I cannot.

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I am halfway through my Evenity shots and then plan on going on Prolea forever. My osteoporosis is terrible so I am just thrilled that these treatments are available. I go to a very well educated experienced rheumatologist and this is his recommendation. I also read a good bit about various choices but this seemed like best plan. I really do not want to break my hip! Thank goodness for these meds

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