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.

@anjalima

Congratulations on the end of phase one your treatment. 🌸

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PHASE 1???????
I thought it was a 12 month program that I am being encouraged to undertake. Not a lifetime.

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I meant the end of Evenity ( next phase would be Reclast you noted) . Hope all is well going forward! 🌸

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I feel encouraged reading your post. Thank you.

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@anjalima

I meant the end of Evenity ( next phase would be Reclast you noted) . Hope all is well going forward! 🌸

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If you srart Evenity, do you have to go on to phase 2 or phase 3 or phase 4? Osteoporosis treatment should not be taking over my life.

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My understanding is that you lock in the gains of Evenity with a Reclast. That’s what my friend did. Best of luck to you with your choices.

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@debcco

I am so glad I found this group. I have learned more from all of you than from my endocrinologist. I had my last Evenity shot yesterday and couldn't get a straight answer from the medical team about when I should have my Reclast infusion. Based on what I have read here and on other parts of the Mayo website, I think it should be about 30 days from yesterday. How soon do you recommend a bone scan to see the (hoped for) improvement in scores? Is it ok to do the scan the same day as the infusion? (I am trying to avoid more than 1 trip to the office since it takes me about an hour to get there.)

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Hello
My experience has been to have the Bone Density test now since you have finished the Evenity. If you're Medicare eligible, they will pay for a Bone Density Test every year "if medically indicated" and since you've been on Evenity that should qualify. Bone Density tests can be read immediately and compared to your prior test IF your physician is willing.
Yes, you can have the scan the same day as as the infusion. Scan first, infusion will last 1 1/2 hours. All of this depends on whether your doc is willing.
My doctor told me that he has seen 15% improvement in Bone Density scores after Evenity if that gives you some measure of its effectiveness.

Best to you and I'm interested in how the transition goes to Reclast.

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Thanks for your input @paala
I was fortunate to not have any noticeable side effects of Evenity. I had a long talk with my primary care physician before deciding to do the shots. She is by no means a medication pusher so her comments that my bone density was worrisome gave me good reason to consider the protocol. It's all about risk/reward, as a physician friend told me.
I have just scheduled my infusion and bone scan. I sure hope to see some improvement in my scores.

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@debcco

Thanks for your input @paala
I was fortunate to not have any noticeable side effects of Evenity. I had a long talk with my primary care physician before deciding to do the shots. She is by no means a medication pusher so her comments that my bone density was worrisome gave me good reason to consider the protocol. It's all about risk/reward, as a physician friend told me.
I have just scheduled my infusion and bone scan. I sure hope to see some improvement in my scores.

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Please let us know how your scores came out if you get a chance. I am on the fence as to whether I should take Evenity or not. I guess you have to get on another medication after Evenity, right?

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@trathfon62

Please let us know how your scores came out if you get a chance. I am on the fence as to whether I should take Evenity or not. I guess you have to get on another medication after Evenity, right?

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Good evening @trathfon62. It is my understanding that Evenity does produce new bone quite rapidly. It is also the only injection medication for osteoporosis that also protects the bone. It will be interesting to see how that works or if you will be asked to take another kind of protection medication.

May you have comfort and ease.
Chris

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@trathfon62

Please let us know how your scores came out if you get a chance. I am on the fence as to whether I should take Evenity or not. I guess you have to get on another medication after Evenity, right?

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After the 12 Evenity injections, I will have an infusion of Reclast. The Evenity is supposed to build new bone and the Reclast is supposed to keep the new bone from deteriorating. Not sure if you have to repeat the Reclast on a regular basis. Perhaps somebody else can answer that question. My endocrinologist has been fairly useless when it comes to communicating and answering questions.

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