My Experience on Evenity

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 Bones, Joints & Muscles group.

@heusty

I’m thinking of going on Evenity after experiencing 3 fractures of my spine. I have been on both fosamax and Prolia. Has anyone had a scan after being on Evenity for a year? What were the results?

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I’m also considering starting Evenity. I have been doing all the @right” things for my bones- exercise, calcium and Vitamin D( my blood work is fine) but my dexa shows more bone loss. I went through early menopause, tried Prolia for 1-2 years in my 40’s, then at age 69, had triple negative breast cancer. ( chemo, no radiation)
Now it’s time to try intervention. I’ll let you know how it goes! Although I have to make sure it’s covered by insurance first😝

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@hdukes9

I’m also considering starting Evenity. I have been doing all the @right” things for my bones- exercise, calcium and Vitamin D( my blood work is fine) but my dexa shows more bone loss. I went through early menopause, tried Prolia for 1-2 years in my 40’s, then at age 69, had triple negative breast cancer. ( chemo, no radiation)
Now it’s time to try intervention. I’ll let you know how it goes! Although I have to make sure it’s covered by insurance first😝

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One small note: DEXA scores go down significantly right after menopause but then the rate of decline is lower. I won't say the DEXA scores stabilize, but the loss is much lower. I don't know your scores but wanted to mention that the rate of loss at menopause tends not to continue.

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I hope it goes well for you.

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@hdukes9

I’m also considering starting Evenity. I have been doing all the @right” things for my bones- exercise, calcium and Vitamin D( my blood work is fine) but my dexa shows more bone loss. I went through early menopause, tried Prolia for 1-2 years in my 40’s, then at age 69, had triple negative breast cancer. ( chemo, no radiation)
Now it’s time to try intervention. I’ll let you know how it goes! Although I have to make sure it’s covered by insurance first😝

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I’d like to know how it goes. I haven’t made a decision yet.

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Did you finally get insurance to cover Evenity?

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Hi,
I have had my first two months of Evenity. I have not had many side effects from the injections. I am a big exerciser (I run and ride a stationary bike every day.) The only side effect I experienced was some muscle cramps in my calf muscles. My arms were not soar. The injections sting some because at my doctor's office keeps the medication refrigerated so it is cold when it is injected. I have only 10 more treatments to go.

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Hello, I have been on Evenity for two months now and it looks like I will need a root canal. Ideally, I know it's not great to have dental procedures while on Evenity. The attitude of both Rheumo and my dentist is that if I need the root canal, I need it, and that's that. I wonder if anyone else here has had any dental work while on Evenity?
Thanks so much,
Lyn in NYC

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I have taken evenity for 7 months with zero side effects. I am interested in information about follow up treatment. If possible I would prefer to continue with anabolic treatment rather than biphosphonates. Can Evenity be followed by Forteo? There is a new protocol approved by FDA for long term treatment with Forteo. Does anyone have information about that new protocol?

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@marcd

I have taken evenity for 7 months with zero side effects. I am interested in information about follow up treatment. If possible I would prefer to continue with anabolic treatment rather than biphosphonates. Can Evenity be followed by Forteo? There is a new protocol approved by FDA for long term treatment with Forteo. Does anyone have information about that new protocol?

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I was told it is okay to do Forteo or Tymlos followed by Evenity but not the other way around, but I don't know if that is true. The reason may be that Evenity "turbocharges" (I remember that word being used) growth leaving less for the others to accomplish. But ask an MD!

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I wonder if your docs were aware that Forteo was approved for long term use? It was approved for long term use in November 2020.

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Thank you for all the information. I’ve decided to start Evenity in January. I’m having Kyproplastic surgery for 3 fractures in my back in January also. Will start Evenity after that.

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hello heusty
Good wishes for your treatment.

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