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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@fredfred123

Was approved for Evenity by my insurance co., had a few months of injections, suddenly the infusion center cut me off several months ago saying that it's not approved by fda for a male and they can't get paid from my insurance co. My insurance company tried to contact them to tell them that they will pay but they are missing information on their billing. They will not return the calls from my insurance co. nor will they return my calls to them. My specialist got me approved for a full year of it and now I have lost several months of this treatment that I desperately need.
My specialist's office says they can't get involved because they just send the script to the infusion center and can't do anything about this. I'm stuck.

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A call to the maker of Evenity, Amgen, might help facilitate a work-around, or a drug-subsidy program that will absorb the cost while you get this straightened out. It's to Amgen's benefit as well as yours to follow the treatment schedule so pester them for help. Also the Amgen people might know the insurance coding.

If you have questions about EVENITY® and would like to speak to a call center representative, please call 1-888-231-5663

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@callalloo

A call to the maker of Evenity, Amgen, might help facilitate a work-around, or a drug-subsidy program that will absorb the cost while you get this straightened out. It's to Amgen's benefit as well as yours to follow the treatment schedule so pester them for help. Also the Amgen people might know the insurance coding.

If you have questions about EVENITY® and would like to speak to a call center representative, please call 1-888-231-5663

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Amgen does not have an assist program but they told me they sometimes have funds from foundations.

The root problem here is that your MD prescribed something that is not FDA approved. Evenity is only approved for women. Many medications are prescribed off label. But that is generally for a different purpose, not a different population. Clearly, only women were studied (a reverse of the usual situation!).

I don't know the answer, but I would talk to supervisors at insurance and at the infusion center. I would also talk to Amgen, as @ callalloo suggested.

The simplest path would be to do Forteo. Tymlos apparently is also only approved for women.

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@haroula

Yes, on and off. Now I am about 6-7 pounds more than previous gains. While I have lost 2” from 5’5” to 5’3”, my weight used to fluctuate between 134-136, now it is 141-143. My spine fracture last year may be to blame in part since I have been less active. Food intake is same as before.

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Hi Haroula, i hope you are fine. I eventually had the answer to my question from Amgen/Evenity Switzerland. They replied that they have no information about weight gain as a side effect but they acknowledge that their database might be incomplete.
Personally I still keep struggling with my scale after my third injection.

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@saz

Hi Haroula, i hope you are fine. I eventually had the answer to my question from Amgen/Evenity Switzerland. They replied that they have no information about weight gain as a side effect but they acknowledge that their database might be incomplete.
Personally I still keep struggling with my scale after my third injection.

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Hi - I just finished my 12 injections of Evenity. I had no real weight gain. Im waiting for my DEXA scan next month to see how the medicine worked.

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@readhead1226

Hi - I just finished my 12 injections of Evenity. I had no real weight gain. Im waiting for my DEXA scan next month to see how the medicine worked.

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Please let us know how you did! A lot of us are considering Evenity.

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@windyshores

Please let us know how you did! A lot of us are considering Evenity.

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I spoke to my dentist about this type of treatment and the first thing he said was to NOT consider Evenity. I have decided to go the 'natural' route but he confirmed my decision after trying multiple oral meds.

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@retired123

I spoke to my dentist about this type of treatment and the first thing he said was to NOT consider Evenity. I have decided to go the 'natural' route but he confirmed my decision after trying multiple oral meds.

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Evenity grows bone and also suppresses turnover, but to a lesser degree than Prolia or biphosphonates, I have been told. So for dental issues it is better than the other two types of meds. And you only use it for one year.

The dentist may say this but an endocrinologist may have more info. I would ask.

Have you tried Tymlos or Forteo? How bad is your DEXA? I have written many times now about my experience with fractures and even the chiropractor who wrote a book on holistic approaches still suggests meds if osteoporosis is severe or fractures have happened.

I would love to support anyone's decision of any kind but fractures are horrible!

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@windyshores

Evenity grows bone and also suppresses turnover, but to a lesser degree than Prolia or biphosphonates, I have been told. So for dental issues it is better than the other two types of meds. And you only use it for one year.

The dentist may say this but an endocrinologist may have more info. I would ask.

Have you tried Tymlos or Forteo? How bad is your DEXA? I have written many times now about my experience with fractures and even the chiropractor who wrote a book on holistic approaches still suggests meds if osteoporosis is severe or fractures have happened.

I would love to support anyone's decision of any kind but fractures are horrible!

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I did speak with my endocrinologist and was advised to speak with my dentist. It seems each doctor has their opinion and it is up to the patient to weigh all the info and decide. You do use it for one year but then you have to move on to a support med or lose the ground you have gained. Landmines no matter what you choose.

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@retired123

I did speak with my endocrinologist and was advised to speak with my dentist. It seems each doctor has their opinion and it is up to the patient to weigh all the info and decide. You do use it for one year but then you have to move on to a support med or lose the ground you have gained. Landmines no matter what you choose.

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Dentists are going to protect dental status and bone doctors are going to protect bones!

I met with Keith McCormick who wrote The Whole Body Approach to Osteoporosis and he did meds then the "natural approach." After restoring density.

Prolia is the only med that causes that deep dive in bone density when stopped.

Hard to sort it all out! Good luck!

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@retired123

I spoke to my dentist about this type of treatment and the first thing he said was to NOT consider Evenity. I have decided to go the 'natural' route but he confirmed my decision after trying multiple oral meds.

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Your dentist has no idea what he is talking about Im sorry. I did extensive research and just finished my Evenity 1 year treatment. If you have osteoporosis you should get on a treatment plan. The risks associated with Osteoporosis far outweigh any potential side effects.

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