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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@marcd

My osteoporosis doctor recommended that I continue Evenity for more than one year. The attached study shows benefit for up to two years.
Following is an update on my use of Evenity for more than one year.
I have now been receiving monthly Evenity for about a year and a half. The side effects (local soreness and a bit fatigue) seem to be a very slight bit more than they were a year ago… but not sure if that is the medication or other factors going on in my life.
In a month or so I plan to arrange for an updated DEXA scan, as well as CTX and P1NP blood tests. (The blood tests give an indication of how the bones will continue to build with continued use of Evenity.)
I will review the results with my doctor. At that point I will decide whether to continue Evenity for another six months. Alternatively, I will pause Evenity and switch over to a bisphosphonate for a period of time – then return to the Evenity treatment.
I am considering Risedronate (Actonel) as the bisphosphonate medication because it works with my longer-term treatment plan.
Here is the explanation: Risedronate (Actonel) does not last very long. My osteoporosis doc says “It detaches quickly from the bone.” That is good from my point of view since I hope to return to Evenity treatment after a period of time. Biphosphonate treatment tends to interfere with the action of Evenity. My hope is that the risedronate/Actonel will help maintain the bone density for a period of time while my CTX and P1NP blood tests show a return to baseline. I will then return to Evenity. Since the Actonel “detaches quickly from the bone” my hope is that the Evenity will be able to work effectively with a fairly short term use of residronate/Actonel
I will appreciate any information from someone who has experience with a course of treatment similar to this or other information that might be useful as I consider this course of treatment.
Thanks!

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I moved your post to this discussion:
- Anyone taken Evenity (romosozumab) for Osteoporosis?: https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

I did this so you can get thoughts and experiences from other members taking Evenity (romosozumab) and for how long they've taken it, like @arlene7 @leslie2121 @dchfl @me49 @willow10 @necole @meomurian as well as @windyshores.

I appreciate the update and info, and will be interested in learning what you decide with your physician, @marcd.

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@windyshores

Can you have a DEXA and determine whether it might be better to save a whole year of Evenity for later? Have you ever done Tymlos or Forteo in the past? (I have read that you can do Evenity after those but not the other way around.)

My endo doc doesn't do the CTX and P1NP blood tests. I did ask my PCP for baseline tests before doing Tymlos. Interesting that your doc does blood tests.

I am doing Tymlos for 18 months. I am going to ask about getting a DEXA after one year (this month) in case I should save the second year for later. The plan was to do DEXA after 18 months, then do a partial dose (1/4) of Reclast to see if I tolerate it (with hydration, premeds, and slow infusion). After one or two infusions I could then take a break and be monitored.

I like your idea of short acting alendronate! Hope you are feeling safer! I know I am....Evenity turbocharges!

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Hello Windyshores
The information I have from my doctor is that I can do Evenity for two years, then switch to biphosphonate, then back to Evenity... but this is his thinking based on his knowledge of Evenity works with the bone chemistry. It is not backed up by any research studies. We discussed the option of switching to Forteo, but the doc felt that since I have had good results from Evenity with minimal side effects -- that it would be best to stick with what has worked for me rather than trying something new.

My doc does not do CTX or P1NP tests. He refers to hospital and the hospital lab does the tests.

Glad you are feeling safer! I read a study that feeling positive reduces the chances of fracture and tends to increase bone density.

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@marcd

Hello Windyshores
The information I have from my doctor is that I can do Evenity for two years, then switch to biphosphonate, then back to Evenity... but this is his thinking based on his knowledge of Evenity works with the bone chemistry. It is not backed up by any research studies. We discussed the option of switching to Forteo, but the doc felt that since I have had good results from Evenity with minimal side effects -- that it would be best to stick with what has worked for me rather than trying something new.

My doc does not do CTX or P1NP tests. He refers to hospital and the hospital lab does the tests.

Glad you are feeling safer! I read a study that feeling positive reduces the chances of fracture and tends to increase bone density.

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I thought Evenity could only be taken for one year total so that is interesting @marcd

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@windyshores

I thought Evenity could only be taken for one year total so that is interesting @marcd

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There is a study showing benefit to taking Evenity for two years. I attached a copy of that study to my post dated three days ago (October 4?). Scrolling up in this chain should take you to that post.

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@marcd

There is a study showing benefit to taking Evenity for two years. I attached a copy of that study to my post dated three days ago (October 4?). Scrolling up in this chain should take you to that post.

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Is it covered by insurance past one year? Studies don't necessarily translate into practice, quickly. I am glad you have been able to do this and I will ask my doc about it.

The Evenity site still says 12 monthly doses.

You seem to have a great doc who is flexible, thoughtful and is personalizing care. Is your doctor stepping outside protocol? Did Amgen provide any assistance? Did your insurance company support this regimen?

The short acting Alendronate is also interesting. I was going to use Reclast because it is long acting! Which might mean breaks. But if my DEXA's are not good enough, I might do the Alendronate instead and go back on Tymlos or try Evenity. So thanks for the idea.

I have been concerned about using any bisphosphonate in case it interferes with future bone-building meds, so the idea that that interference could be lessened with a shorter acting bisphosphonate is one I will remember .

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I would like to join this discussion, so hopefully we can share information !
I received Prolia ( two injections, six months apart) in 2021, and was not willing to continue with Prolia because of the severe muscle and joint pain that I experienced. As a transition medication I received an infusion of Reclast in March of 2022. I am hoping that this one year on Reclast will be sufficient to protect me from the rebound of Prolia. However I now need to have a root removed from a tooth that broke off at the gum. Has anyone had any experience having a root removed during the first year on Reclast ?
Thank you,

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@hlp123

I would like to join this discussion, so hopefully we can share information !
I received Prolia ( two injections, six months apart) in 2021, and was not willing to continue with Prolia because of the severe muscle and joint pain that I experienced. As a transition medication I received an infusion of Reclast in March of 2022. I am hoping that this one year on Reclast will be sufficient to protect me from the rebound of Prolia. However I now need to have a root removed from a tooth that broke off at the gum. Has anyone had any experience having a root removed during the first year on Reclast ?
Thank you,

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What do your doctor and dentist say? Have you met with a specialist (dental)?

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@windyshores

Is it covered by insurance past one year? Studies don't necessarily translate into practice, quickly. I am glad you have been able to do this and I will ask my doc about it.

The Evenity site still says 12 monthly doses.

You seem to have a great doc who is flexible, thoughtful and is personalizing care. Is your doctor stepping outside protocol? Did Amgen provide any assistance? Did your insurance company support this regimen?

The short acting Alendronate is also interesting. I was going to use Reclast because it is long acting! Which might mean breaks. But if my DEXA's are not good enough, I might do the Alendronate instead and go back on Tymlos or try Evenity. So thanks for the idea.

I have been concerned about using any bisphosphonate in case it interferes with future bone-building meds, so the idea that that interference could be lessened with a shorter acting bisphosphonate is one I will remember .

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My insurance situation is different since I live overseas. It so happens that my insurance covers 90% without limits on number of doses.

The official recommendation for Evenity is still 12 monthly doses.

Amgen funded the study that I cited (no suprise) but did not provide any specific information to me.

I would be very interested in your doc's reaction to the longer use of Evenity and the sequence of meds I am planning to follow. I find that more thoughts help me to make more informed (and hopefully more successful) decisions.

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@marcd

My insurance situation is different since I live overseas. It so happens that my insurance covers 90% without limits on number of doses.

The official recommendation for Evenity is still 12 monthly doses.

Amgen funded the study that I cited (no suprise) but did not provide any specific information to me.

I would be very interested in your doc's reaction to the longer use of Evenity and the sequence of meds I am planning to follow. I find that more thoughts help me to make more informed (and hopefully more successful) decisions.

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I will let you know. I suggested Evenity after Tymlos myself to my doc and even sent him some quotes from a forum! I love my doc and he is open to any discussion. Docs are often limited by FDA and other approved protocols but he is flexible.

It looks like things are more possible in whatever country you are in.

Amgen does not have patient assistance. Right now my Tymlos is free. Amgen told me they have a foundation(s) but it sometimes does not have funds left!

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@marcd

My insurance situation is different since I live overseas. It so happens that my insurance covers 90% without limits on number of doses.

The official recommendation for Evenity is still 12 monthly doses.

Amgen funded the study that I cited (no suprise) but did not provide any specific information to me.

I would be very interested in your doc's reaction to the longer use of Evenity and the sequence of meds I am planning to follow. I find that more thoughts help me to make more informed (and hopefully more successful) decisions.

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I am considering Evenity. Have doc appts coming up to discuss. The black box warning makes me very nervous

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