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.

laurensb | @laurensb | Jan 9 8:07am

I hear you! Should be easier than this. 😊

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hopefullibrarian | @hopefullibrarian | Jan 9 9:30am
In reply to @windyshores "@golfcook I was told you should not do Forteo or Tymlos after Evenity because Evenity "turbocharges"..." + (show)
@windyshores

@golfcook I was told you should not do Forteo or Tymlos after Evenity because Evenity "turbocharges" growth and there is nothing left for the other drugs to do.

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I'm curious if, a few years after taking Evenity, a follow-up anti-resorpative, then a drug vacation, Tymlos or Forteo might then work. I suppose Evenity is still too new to be sure what impact it may have with time, but theoretically, at least in the optimistic half of my mind, it's a possibility.

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1 reply
kristie2 | @kristie2 | Jan 9 10:10am
In reply to @susanfalcon52 "I just had my 8th Evenity injections and have decided to go on Reclast next. I..." + (show)
@susanfalcon52

I just had my 8th Evenity injections and have decided to go on Reclast next.
I saw my dentist yesterday and told her (again) how worried I am about necrosis of the jaw. She told me to stop worrying about it as it doesn’t just appear, but may be a problem if I had to have a tooth pulled. I actually have more faith in her than I do the endocrinologist.
So, I have ceased worrying about Evenity and now worry about Reclast. 😏

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I am going on my 6th injection of Evenity and I also worry about jaw necrosis. After listening to McCormick on a podcast I am done worrying.
I also am deciding on either reclast or Actonel after Evenity .
ONJ is linked to the continuous use for more than 3-5 years.

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windyshores | @windyshores | Jan 9 11:20am
In reply to @hopefullibrarian "I'm curious if, a few years after taking Evenity, a follow-up anti-resorpative, then a drug vacation,..." + (show)
@hopefullibrarian

I'm curious if, a few years after taking Evenity, a follow-up anti-resorpative, then a drug vacation, Tymlos or Forteo might then work. I suppose Evenity is still too new to be sure what impact it may have with time, but theoretically, at least in the optimistic half of my mind, it's a possibility.

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@hopeful librarian I have wondered that too and it is something I want to ask my doc. But most questions about Evenity bring a response of "we don't have data yet. Intuitively, if there has been bone loss after that regimen, I would think Tymlos or Forteo would be possible! It is probably too soon after the introduction of Evenity to ask if anyone on the forum has experience with that!

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wakefield | @wakefield | Jan 9 1:42pm
In reply to @wilkenl "I can totally relate to your story, @ccduplass. Mine is almost exactly the same, though I..." + (show)
@wilkenl

I can totally relate to your story, @ccduplass. Mine is almost exactly the same, though I wouldn't qualify myself as "athletic" lol! I am active, I do exercise, and I do walk, but nobody would want to choose me for their team!

I would suggest that you get Dr. McCormick's book. I almost cried when I started reading it, wishing it had been available to me four years ago when I started this journey. I would have done A LOT of things differently. My argument is similar to yours - I haven't suffered any fractures (knock on wood), I'm very healthy, and I don't understand why I would take a medication (Evenity) that a) could give me a heart attack or stroke, and b) could cause my long bones to start fracturing. I would prefer to continue with my good health until I have a reason (i.e., a fracture) to start meds. I have to add that I started with oral alendronate about 18 months ago, but only lasted three months before I developed GERD. Now have that to deal with, too. 🙁

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I was on alendronate for 11 months in 2021 and my jaw started cracking and I almost felt like I had lock jaw. I stopped taking it immediately, my jaw was better after a few weeks.
I've been working with my diet and I started power walking last Dec and now I'm taking K-2/Vitamin D3 along with my other vitamins, including organic Zen basil seeds (amazon)that I've been taking for about a year now. I also jump 10x's a day with a 30 min. break in between the jumps. My spine score went from -3.1 to -2.8 scan was done Dec 6, 2023 (2years after last test). I also just bought a Marodyne LIV (low impact vibration platform)after a month of research, it should be delivered by Friday.
I also bought Dr. McCormicks book this week, it's excellent. I read his 1st book last week.
Everyone's posts are appreciated and valued.
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1 reply
golfcook | @golfcook | Jan 9 2:23pm
In reply to @windyshores "@golfcook I was told you should not do Forteo or Tymlos after Evenity because Evenity "turbocharges"..." + (show)
@windyshores

@golfcook I was told you should not do Forteo or Tymlos after Evenity because Evenity "turbocharges" growth and there is nothing left for the other drugs to do.

Jump to this post

Thanks for clarifying why you should not do Forteo or Tymlos after Evenity. Too much information to try and absorb. I started cutting and pasting from various websites and it's now become a mammoth chore to try and find definitive answers. I even asked my periodontist who is well aware that I've lost most of my teeth to necrosis of the jaw [following a root canal while on Fosomax] and all he said was he deferred to the expertise of the osteoporosis specialist! so much for a second opinion.

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golfcook | @golfcook | Jan 9 2:32pm
In reply to @laurensb "Have you decided what you are going to do after your finish the Evenity? I am..." + (show)
@laurensb

Have you decided what you are going to do after your finish the Evenity? I am only half way through Evenity but starting to think about what I do next.

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I wish I had started earlier to do research to figure out what comes next. After many many hours, I have narrowed it down to two options: Reclast or Actonel.
My preference would be to do the once a year infusion of Reclast for two reasons: I already have GERD so don't want any medication that can make that situation worse, and I also have a family history of kidney failure/disease so prefer not to take any drugs by mouth. I so wish one of these options was a skin patch instead!
If I cannot do Reclast in my rural area in Canada, then my second choice would be Actonel but again the monthly not daily or weekly dosages. Hope this might help someone else make a very difficult decision!

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hopefullibrarian | @hopefullibrarian | Jan 9 2:46pm
In reply to @wakefield "I was on alendronate for 11 months in 2021 and my jaw started cracking and I..." + (show)
@wakefield

I was on alendronate for 11 months in 2021 and my jaw started cracking and I almost felt like I had lock jaw. I stopped taking it immediately, my jaw was better after a few weeks.
I've been working with my diet and I started power walking last Dec and now I'm taking K-2/Vitamin D3 along with my other vitamins, including organic Zen basil seeds (amazon)that I've been taking for about a year now. I also jump 10x's a day with a 30 min. break in between the jumps. My spine score went from -3.1 to -2.8 scan was done Dec 6, 2023 (2years after last test). I also just bought a Marodyne LIV (low impact vibration platform)after a month of research, it should be delivered by Friday.
I also bought Dr. McCormicks book this week, it's excellent. I read his 1st book last week.
Everyone's posts are appreciated and valued.

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That's great! You are the poster child for what can be achieved, if the conditions are right, without OP drugs.

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poc1115 | @poc1115 | Jan 10 4:06pm
In reply to @loiscapecod "I have been on Evenity for almost a year and just had a bone density test..." + (show)
@loiscapecod

I have been on Evenity for almost a year and just had a bone density test so not sure if it works. My insurance does pay for it though. I will follow up with the results of my test. I have lost almost 4 inches of height so I wish there was something that would help. I also have severe scoliosis which affects my balance. I need a new spine!!!

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Did you experience side effects once you started the Evenity? If you did, how long before the side effects went away?
Thank you

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poc1115 | @poc1115 | Jan 10 4:12pm

Has anyone at all had a Reclast infusion? If so, what side effects were experienced? Were they long lasting effects? Did they go away eventually? How long did they (effects) last?
Thank you

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