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.

daisy2022 | @daisy2022 | Sep 25 9:54pm
In reply to @daisy2022 "It was interesting to read everyone’s experiences. I began treatment in November, 2021 and have completed..." + (show)
@daisy2022

It was interesting to read everyone’s experiences. I began treatment in November, 2021 and have completed 6 months of the year long plan. My side affects are mostly of swelling at the injection site in my arms and fatigue the day after. I’ve found using massage, heat packs, and sometimes lavender oil to help the medication disperse more quickly. My left arm seems to hold the fluid longer which accounts for the different methods to help with the swelling and fluid dispersement. In general I feel great. Like many of you, my spine is the main reason I began this protocol and hope it is successful. I’ll continue to check back to see how our journeys are progressing.

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Wow! I was surprised to receive a response to this post today, 09/25/2024. I completed the of Evenity w/o any issues other than described at the injection site. I proceeded then to 1-½ years of treatments on Prolia. At that point I was experiencing a great many difficulties in my left leg, ankle, knee, and hip that I requested we stop and try something else. (The right leg was beginning to mimic the left leg.) I had an X-ray of left ankle within 5 weeks of the first Prolia injection for unexplained pain therefore there was weight to my request to change. My last Prolia injection was December, 2023. My left leg has returned to normal, I have no issues in my right leg and have gone back to jogging with no joint issues. I’m grateful my physician worked with me and helped me transfer to Reclast. I had several tough weeks with fatigue, difficult flu issues but they seem to have resolved. We will be doing another Dexa-scan in a few months to see if my body is building bone as it did with Evenity. Pay attention to your body and what you feel as you move through a treatment. We need to do our part by eating well, exercising regularly and being informed. Good luck!

REPLY
1 reply
yingjichi | @yingjichi | Sep 26 12:10pm
In reply to @daisy2022 "Wow! I was surprised to receive a response to this post today, 09/25/2024. I completed the..." + (show)
@daisy2022

Wow! I was surprised to receive a response to this post today, 09/25/2024. I completed the of Evenity w/o any issues other than described at the injection site. I proceeded then to 1-½ years of treatments on Prolia. At that point I was experiencing a great many difficulties in my left leg, ankle, knee, and hip that I requested we stop and try something else. (The right leg was beginning to mimic the left leg.) I had an X-ray of left ankle within 5 weeks of the first Prolia injection for unexplained pain therefore there was weight to my request to change. My last Prolia injection was December, 2023. My left leg has returned to normal, I have no issues in my right leg and have gone back to jogging with no joint issues. I’m grateful my physician worked with me and helped me transfer to Reclast. I had several tough weeks with fatigue, difficult flu issues but they seem to have resolved. We will be doing another Dexa-scan in a few months to see if my body is building bone as it did with Evenity. Pay attention to your body and what you feel as you move through a treatment. We need to do our part by eating well, exercising regularly and being informed. Good luck!

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Thank you for sharing the information. I wanted to jog to help build bones but my femur neck was -4.2. How did get comfortable resuming jogging?

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1 reply
windyshores | @windyshores | Sep 26 12:19pm
In reply to @yingjichi "Thank you for sharing the information. I wanted to jog to help build bones but my..." + (show)
@yingjichi

Thank you for sharing the information. I wanted to jog to help build bones but my femur neck was -4.2. How did get comfortable resuming jogging?

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@yingjichi I do not job with a femur neck of -3.7. I walk a lot. I will not do anything that strenuous until meds bring my scores up (my spine is now -2.5 from -3/7 on Tymlos). You can rely on meds to do the job without jogging!

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2 replies
yingjichi | @yingjichi | Sep 26 1:32pm
In reply to @windyshores "@yingjichi I do not job with a femur neck of -3.7. I walk a lot. I..." + (show)
@windyshores

@yingjichi I do not job with a femur neck of -3.7. I walk a lot. I will not do anything that strenuous until meds bring my scores up (my spine is now -2.5 from -3/7 on Tymlos). You can rely on meds to do the job without jogging!

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I started my first Evenity shot last week. No noticeable side effects except fatigue or maybe I walked too fast in Texas hot summer days😂 I’ll try anything to improve my bones, med, supplements, and lifestyle change. I already had spinal fractures. Don’t want to go through these painful episodes again!

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yingjichi | @yingjichi | Sep 26 1:36pm
In reply to @windyshores "@yingjichi I do not job with a femur neck of -3.7. I walk a lot. I..." + (show)
@windyshores

@yingjichi I do not job with a femur neck of -3.7. I walk a lot. I will not do anything that strenuous until meds bring my scores up (my spine is now -2.5 from -3/7 on Tymlos). You can rely on meds to do the job without jogging!

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Sorry question again: you had both Evenity and Tymlos?

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1 reply
windyshores | @windyshores | Sep 26 2:30pm
In reply to @yingjichi "Sorry question again: you had both Evenity and Tymlos?" + (show)
@yingjichi

Sorry question again: you had both Evenity and Tymlos?

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Sorry for typo. I meant "jog" not "job"!

I had Tymlos 2 years, Evenity 4 months and so far 2 Reclasts (every three months at lower dose).

Others have done Tymlos (or Forteo) and then Evenity. In 2021 I was told it was better to do that then Evenity first so that is why I did Tymlos, so I had the option to do a second bone builder.

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bradford14design | @bradford14design | Oct 7 3:49pm
In reply to @me49 "Karmakay22, Good morning! My fatigue lasted about 2 weeks since it's the half life of Evenity...." + (show)
@me49

Karmakay22, Good morning!
My fatigue lasted about 2 weeks since it's the half life of Evenity. It wasn't only fatigue, but the spaciness that went with it. I decided to discontinue after the 6th shot. There were other side effects like muscle spasms, jaw and tooth pain. I didn't like how this was evolving .I am currently on Fosamax. I hope the side effects arent as problematic. Best wishes for healthy bone growth

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@karmakay
I had my 10th Evenity shot 12 days ago. The fatigue and spaciness this month were the worst. Today, 12th day, I'm bone tired and have no appetite.
The first 3 months there were no side effects. With the last 7, I've had varying degrees of being super tired, balance issues, brain fog/spaciness, zero appetite and insomnia.
Since there are only 2 months left, I'm willing to tough it out. May change my mind on dose 12 if side effects of 11 are worse than this month.

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shamrock24 | @shamrock24 | Oct 8 1:48pm

I am 65 years old. After 3 spinal compression fractures within 3 months and with much research and consultation, I reluctantly decided to go on Evenity. My spine t scores were -3.7. After a year, my spine improved to -2.9. I recently had my first Reclast infusion. I had little to no side affects with either drug. I am worried about future dental issues that may arise. But, I am hopeful that I will be able to continue an active lifestyle. Prayers and the best of luck to all those on this journey.

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4deborahrb | @4deborahrb | Oct 18 5:40pm
In reply to @contentandwell "@erikas I have not yet been on any osteoporosis drugs but I expect to start on..." + (show)
@contentandwell

@erikas I have not yet been on any osteoporosis drugs but I expect to start on Tymlos within a few days.

@sarahw02 I hope your problems from Evinity will resolve quickly, I wish I could say something helpful.
JK

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I just finished 4 months of Tymlos following spinal fusion. I was taking Prolia without any side effects and had mild improvement on my last Dexa. However the surgeon wanted a better bone building medication. While on Tymlos, which is self injectable in the abdomen, I experienced almost daily nausea, dizziness and drop in blood pressure when standing. I also had 3 bouts of Vertigo lasting 24 hrs. I’m now looking into taking Evenity because I just can’t tolerate the side effects of the Tymlos anymore. I hope you don’t have the same issues.

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1 reply
windyshores | @windyshores | Oct 19 4:41am
In reply to @4deborahrb "I just finished 4 months of Tymlos following spinal fusion. I was taking Prolia without any..." + (show)
@4deborahrb

I just finished 4 months of Tymlos following spinal fusion. I was taking Prolia without any side effects and had mild improvement on my last Dexa. However the surgeon wanted a better bone building medication. While on Tymlos, which is self injectable in the abdomen, I experienced almost daily nausea, dizziness and drop in blood pressure when standing. I also had 3 bouts of Vertigo lasting 24 hrs. I’m now looking into taking Evenity because I just can’t tolerate the side effects of the Tymlos anymore. I hope you don’t have the same issues.

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@4deborahrb according to McCormick ("Great Bones") and Ben Leder MD (YouTube "Combining and Sequential Approaches to Osteoporosis") Tymlos is not effective after Prolia. Someone posted a study on this forum that Evenity did manage the rebound from Prolia with some, if limited, effectiveness in terms of bone density. Was Reclast discussed at all? Have you had a DEXA to see where you are now? Did the surgeon manage your osteoporosis and put you on Tymlos after Prolia, or was it your endocrinologist?

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