My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

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

@maryannp55

I shatterd my wrist in late 2019 at age 64, so surgery and metal plates. No discussion of bone mass, then came Covid so no chance to update scans until January 2022. Now my lumbar spine is above 4 so my new rheumatologist is aghast! She prescribed Evenity but I cannot get through the insurance gauntlet. She also mentioned Forteo but that may be my next attempt at getting some treatment.

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As I understand it, Evenity is covered under Medicare if you can wait till 65. ALSO: if you go to the Evenity website you can sign up for a copay that will reduce cost to $25!! Then you only need to cover the injection visit…I did this when my then insurance company was going to charge me $400/month. I did a year of Evenity and just had my Reclast infusion. My bone mass in a critical area went up 12%!! Think I’m technically osteopenia-so yeah?

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Just started evenity yesterday, and I have a headache that doesnt seem to want to go away even after taking tylenol. Had anyone else experienced this?

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Occasionally but not enough to take anything. Seems the muscle/joint aches are getting less as I go- getting #5 this week.
Hope you have a similar experience. 😊

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@maryannp55

I shatterd my wrist in late 2019 at age 64, so surgery and metal plates. No discussion of bone mass, then came Covid so no chance to update scans until January 2022. Now my lumbar spine is above 4 so my new rheumatologist is aghast! She prescribed Evenity but I cannot get through the insurance gauntlet. She also mentioned Forteo but that may be my next attempt at getting some treatment.

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Lovely picture of you MaryAnn. Will you add it to your profile https://connect.mayoclinic.org/member/00-386d1a6bb4b6a571280793/?

Have you considered asking your doctor to help with getting through insurance approvals?

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@shieldmom

As I understand it, Evenity is covered under Medicare if you can wait till 65. ALSO: if you go to the Evenity website you can sign up for a copay that will reduce cost to $25!! Then you only need to cover the injection visit…I did this when my then insurance company was going to charge me $400/month. I did a year of Evenity and just had my Reclast infusion. My bone mass in a critical area went up 12%!! Think I’m technically osteopenia-so yeah?

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Good to hear such a great improvement. happy for you.
I haven’t broken anything yet, but it’s only a matter of time. The natural route just isn’t holding bone mass much less building it.

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@callalloo

My impression is that there is no stopping Prolia for a few weeks. (And I could be wrong .) At least without immediately going on a relay drug to try to prevent the bone loss triggered by discontinuing Prolia. For what it's worth, my endocrinologist has patients who were put on Prolia elsewhere and want to get off of it, and he begins the relay drug while still in Prolia if the drug is a bisphosphonate to try to alleviate the issues from quitting Prolia. And he does not prescribe Prolia himself any more.

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Amgen has a black box warning on the insert (which most patients do not see unless you open the package and read it before handing over to the nurse/doctor giving the injection) advising not to stop taking Prolia cold turkey. I have read it. On Prolia for 4 yrs and would have to transition off on to Reclast. 100% you cannot just quit taking Prolia without backup plan or at high risk for fracturing.

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@sue225

Amgen has a black box warning on the insert (which most patients do not see unless you open the package and read it before handing over to the nurse/doctor giving the injection) advising not to stop taking Prolia cold turkey. I have read it. On Prolia for 4 yrs and would have to transition off on to Reclast. 100% you cannot just quit taking Prolia without backup plan or at high risk for fracturing.

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Thanks for noting that. I agree that most people don't read the package insert. I swear they're printed in increasingly-tiny font. Or my eyes are aging along? LOLA

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@callalloo

Thanks for noting that. I agree that most people don't read the package insert. I swear they're printed in increasingly-tiny font. Or my eyes are aging along? LOLA

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That too!

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My Doctor put me on the Prolia shot without filling me in on all the side effects .
I didn’t do any research on the shot or I would have never taken it . I just went in and got the shot because my doctor told me that’s what I needed because I had severe osteoporosis. It was done in Doctors office . When my insurance stopped paying for it after 3 years of being on it I had to stop taking it . After 7 months of being off Prolia I have had 3 fractures. Wish I had done some research on it and just not took my Doctors advice

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@patmills

My Doctor put me on the Prolia shot without filling me in on all the side effects .
I didn’t do any research on the shot or I would have never taken it . I just went in and got the shot because my doctor told me that’s what I needed because I had severe osteoporosis. It was done in Doctors office . When my insurance stopped paying for it after 3 years of being on it I had to stop taking it . After 7 months of being off Prolia I have had 3 fractures. Wish I had done some research on it and just not took my Doctors advice

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@patmills Are your fractures in the spine?

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