1. < Osteoporosis & Bone Health

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.

ingridbergman | @ingridbergman | Jan 20 10:28pm

*I took Evenity for 12 months and had no improvement at all in my bad bone mineral density. This is very disappointing. Has anyone else had the same experience? My dr. said that it is because the Evenity was given too close to IV Reclast with only one year between the Reclast and the Evenity.

REPLY
1 reply
windyshores | @windyshores | Jan 21 5:27am
In reply to @ingridbergman "*I took Evenity for 12 months and had no improvement at all in my bad bone..." + (show)
@ingridbergman

*I took Evenity for 12 months and had no improvement at all in my bad bone mineral density. This is very disappointing. Has anyone else had the same experience? My dr. said that it is because the Evenity was given too close to IV Reclast with only one year between the Reclast and the Evenity.

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@ingridbergman so sorry. Did your doc say how long people should wait between Reclast and Evenity? Reclast will affect effectiveness anyway (I read by about 50%). But I would have expected some impact for you and am really sorry. What are you doing next?

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ingridbergman | @ingridbergman | Jan 21 12:21pm

Thank you for your comment. The PA I saw did not say how long people should wait between Reclast and Evenity.
I don't think she knew. About 5 weeks after my last Evenity shot an endocrinologist ordered a full dose of Reclast which I did get. {i have now had a total of 6 doses of Reclast, the maximum]. i am scheduled to see the endocrinologist again in October and have bone markers. I have also had 2 years of Forteo before all the Reclast.
I do not want Prolia. i have 4 collapsed vertebrae but did not collapse any more vertebrae since I started with Forteo. I am interested in further suggestions from you.

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estaban | @estaban | Jan 21 2:32pm
In reply to @muroberts "Thank you for response and I will look at the other medications. My doctor doesn't appear..." + (show)
@muroberts

Thank you for response and I will look at the other medications. My doctor doesn't appear too concerned that these we side effects, but ER doctor did think it could be side effects. I'm not sure there will be a next round of shots since some folks on-line have said side effects get worse with more shots.

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Yes, the side effects do get worse. First shot, no effects. Second shot, headaches, not able to sleep. Third shot, heart palpitations, headaches got worse, swelling of face. No more shots for me although my doctor said he'd never heard of reactions like mine. No more doctor either!

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 21 2:49pm
In reply to @muroberts "Thank you for response and I will look at the other medications. My doctor doesn't appear..." + (show)
@muroberts

Thank you for response and I will look at the other medications. My doctor doesn't appear too concerned that these we side effects, but ER doctor did think it could be side effects. I'm not sure there will be a next round of shots since some folks on-line have said side effects get worse with more shots.

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@muroberts.......Just a follow-up........to @windyshores. I ended up with Tymlos for two years of daily injections.
I had similar rashes with my first attempt at Boniva....a biphosphonate. No side effects and significant improvement when I switched to Tymlos, a bone builder like Evenity.
Chris

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1 reply
windyshores | @windyshores | Jan 21 3:25pm
In reply to @artscaping "@muroberts.......Just a follow-up........to @windyshores. I ended up with Tymlos for two years of daily injections. I..." + (show)
@artscaping

@muroberts.......Just a follow-up........to @windyshores. I ended up with Tymlos for two years of daily injections.
I had similar rashes with my first attempt at Boniva....a biphosphonate. No side effects and significant improvement when I switched to Tymlos, a bone builder like Evenity.
Chris

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@artscaping what did you do after Tymlos?

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1 reply
windyshores | @windyshores | Jan 21 3:27pm

When doctors tell us they have never heard of a side effect, what is the message they are trying to give us? Do they not believe us? @estaban I am sorry you heard that too. Evenity is a relatively new medication and doctors should be reporting what we tell them. They might also take the time to google the Evenity site because the side effects my doctor had not heard of are right on there.

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 21 3:37pm
In reply to @windyshores "@artscaping what did you do after Tymlos?" + (show)
@windyshores

@artscaping what did you do after Tymlos?

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Hi there.....
After Tymlos came a nightmare. My endocrinologist at the time only RX'd Prolia. I was told there were no other choices. After two injections with some heavy-duty dental issues and keeping a tell-tale journal, my PCP supported a consultation with Mayo Clinic. Dr. Wermers was just fantastic and has stuck with me. We switched to Fosamax on the scheduled date of the next Prolia infusion. I take one tablet every Monday morning. So far, so good. He has also been helpful to Connect. Lucky me!!!!!
Chris

PS. I agree about the side effects issue. Some medical sites encourage you to call in side effects and report them. I use Drugs.com also.

REPLY
1 reply
windyshores | @windyshores | Jan 22 5:49am
In reply to @artscaping "Hi there..... After Tymlos came a nightmare. My endocrinologist at the time only RX'd Prolia. I..." + (show)
@artscaping

Hi there.....
After Tymlos came a nightmare. My endocrinologist at the time only RX'd Prolia. I was told there were no other choices. After two injections with some heavy-duty dental issues and keeping a tell-tale journal, my PCP supported a consultation with Mayo Clinic. Dr. Wermers was just fantastic and has stuck with me. We switched to Fosamax on the scheduled date of the next Prolia infusion. I take one tablet every Monday morning. So far, so good. He has also been helpful to Connect. Lucky me!!!!!
Chris

PS. I agree about the side effects issue. Some medical sites encourage you to call in side effects and report them. I use Drugs.com also.

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@artscaping thanks for responding. I have re[orted online to MedWatch about side effects for meds and in the case of Evenity, I called Amgen.

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2 replies
muroberts | @muroberts | Jan 22 10:45am
In reply to @estaban "Yes, the side effects do get worse. First shot, no effects. Second shot, headaches, not able..." + (show)
@estaban

Yes, the side effects do get worse. First shot, no effects. Second shot, headaches, not able to sleep. Third shot, heart palpitations, headaches got worse, swelling of face. No more shots for me although my doctor said he'd never heard of reactions like mine. No more doctor either!

Jump to this post

My doctor said the same thing about my reactions -- she has never had anyone mention any side-effects to her, though she has been prescribing it for a while.

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