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.

@windyshores

Tymlos has a patient assistance program. Is that first cost including deductible? I mena, does the cost go down? I get mine for free from Radius Assist via Togehter with Tymlos where they give you a personal representative. Evenity?Amgen does not have an assistance program and I could not afford that!

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Thanks so much. I will look into that. My Dr. told me that Evenity is covered by Medicare whereas Tymlos & Forte are only covered under the Part D Prescription Portion. I would much rather go on Tymlos or Forte first.

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@gulfcoastwoman

Did you get good results? Can I ask how old you are and how active you were before starting Evenity? I am 71 and have tried everything else- fosamax, evista, and prolia, My spine is back in the normal range after Prolia but my hips have gotten worse. I'm very active- I have been working with a personal trainer for strength training several times a week for 4 years trying to address my osteoporosis that way. I have a Peloton and do a rigorous ride for 45 mins 3 times a week. My husband & I like to travel internationally and domestically and do that several times a year.
After reading these posts and the info about side effects I am very apprehensive.
Thanks you! Gulf Coast Woman (Janice)

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I’m with you. I’m 71 and have osteoporosis. I’m getting more active by weight lifting, hiking and other exercises. I took Prolia for 6 years and then switched to Evenity. I’m about to get my 9th set of injections this month. I hope all this helps. I also cut back considerably on alcohol. For a few years, I was having a drink most days. No more. Good luck on your health journey.

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@solveigsp

I’m with you. I’m 71 and have osteoporosis. I’m getting more active by weight lifting, hiking and other exercises. I took Prolia for 6 years and then switched to Evenity. I’m about to get my 9th set of injections this month. I hope all this helps. I also cut back considerably on alcohol. For a few years, I was having a drink most days. No more. Good luck on your health journey.

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Thanks so much for sharing your story & good for you for cutting back on alcohol! It’s not easy! Have you had any side effects from Evenity?

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I honestly don’t know if I’m having side effects. The injections - one in each arm - is painful and my arms are slightly sore for a day or so. I’m having some lower back pain that could be a side effect or could be normal aging pain. I’m aching when I first get up in the morning and after sitting or lying on the couch. I have started to play Pickleball and have no pain so it’s a mystery. I had a recent x-ray and my hip bones looked good. My spine was more noticeably fragile but it’s not a bone density test so I won’t know the effect of Evenity for many months. I want to do all I can to build bone so traveling and my other activities can continue for years to come. I also work part time as a city council representative.

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@solveigsp

I honestly don’t know if I’m having side effects. The injections - one in each arm - is painful and my arms are slightly sore for a day or so. I’m having some lower back pain that could be a side effect or could be normal aging pain. I’m aching when I first get up in the morning and after sitting or lying on the couch. I have started to play Pickleball and have no pain so it’s a mystery. I had a recent x-ray and my hip bones looked good. My spine was more noticeably fragile but it’s not a bone density test so I won’t know the effect of Evenity for many months. I want to do all I can to build bone so traveling and my other activities can continue for years to come. I also work part time as a city council representative.

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Thanks for your information. It sounds like you’re doing very well on it. I actually stopped playing pickleball because my dr was concerned about me falling. 😜 I will
probably start again. I also want to continue to travel. Last Spring we went to Sicily & Puglia & I’ve just finished planning a trip to Greece for the Fall.
I don’t really see any other option than Evenity.

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My doctor said that I can do pretty much whatever I want but not to fall. Yea Pickleball is a bit of a risk but it’s fun. After reading about my options I decided that Evenity was the only reasonable choice at this point. So I’m sticking with it until I’m advised otherwise. BTW, a few friends and I are in the Florida panhandle looking at the gulf waves off our deck right now. Where are you along the gulf?

My husband and I traveled through Rome and northern Italy, Switzerland, France and England last year after 7 women friends and I spent 10 days in Tuscany. It was great! We want to go to Sicily and the Amalfi Coast in the future. I’d like to return to Greece but that’s not on our schedule now.

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@solveigsp

My doctor said that I can do pretty much whatever I want but not to fall. Yea Pickleball is a bit of a risk but it’s fun. After reading about my options I decided that Evenity was the only reasonable choice at this point. So I’m sticking with it until I’m advised otherwise. BTW, a few friends and I are in the Florida panhandle looking at the gulf waves off our deck right now. Where are you along the gulf?

My husband and I traveled through Rome and northern Italy, Switzerland, France and England last year after 7 women friends and I spent 10 days in Tuscany. It was great! We want to go to Sicily and the Amalfi Coast in the future. I’d like to return to Greece but that’s not on our schedule now.

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I am just north of Sarasota & 8 miles from Anna Maria Island. We’re experiencing red tide right now- pretty bad. I highly recommend Sicily & Puglia- much less traveled & very affordable. I thought of what you said about not knowing if your pain is a side effect or just normal aging when I woke up this morning with leg & back pain. I was on the Peloton yesterday for 45 mins so that was probably the reason but I thought if I was on Evenity that’s what I would blame. 😩 Have fun with your friends. Where do you live?

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@solveigsp

My doctor said that I can do pretty much whatever I want but not to fall. Yea Pickleball is a bit of a risk but it’s fun. After reading about my options I decided that Evenity was the only reasonable choice at this point. So I’m sticking with it until I’m advised otherwise. BTW, a few friends and I are in the Florida panhandle looking at the gulf waves off our deck right now. Where are you along the gulf?

My husband and I traveled through Rome and northern Italy, Switzerland, France and England last year after 7 women friends and I spent 10 days in Tuscany. It was great! We want to go to Sicily and the Amalfi Coast in the future. I’d like to return to Greece but that’s not on our schedule now.

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You are amazing. I love how you are living your life. I am 64 and have severe osteo and will be taking either evenity or one of the daily injectable’s soon. Dealing with a tooth issue first.
I love how active you are. Did the treatments help you to feel stronger and did your spine improve with treatments?
We are planning some travel to Greece as well.

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I am getting ready for my 8th shot of Evenity. I have not had any serious issues. I do get tired for a couple of days after my shot. I even had to get a tooth removed. It was a crown that had broken off and the root canal had to be removed. I have had a hip replacement many years ago so I could not risk the chance of leaving the tooth in and it getting infected. I had discussions with my internist and my oral surgeon before deciding to go ahead with the removal.

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@gulfcoastwoman

Thanks so much. I will look into that. My Dr. told me that Evenity is covered by Medicare whereas Tymlos & Forte are only covered under the Part D Prescription Portion. I would much rather go on Tymlos or Forte first.

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I tried Tymlos but I could not get in their patient assistance program. If I remember, their limits are very low.

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