1. < Osteoporosis & Bone Health

Anyone taken Evinity without side affects

Posted by dreamjean1958 @dreamjean1958, Feb 14, 2023

I have a very severe case of Osteriporosis . WS on Forteo a yr . After being on Forteo. Your suppose to be put on a maintainence. I never was . My surgeon out of network. Prescribed Forteo. 2018 . I took for 13 months . My spine Dr . Or someone dropped the ball. I took calcium and Vit D 3 . My bones are now super bad . No medication was prescribed . I have fractured my foot twice in 2022 . 3 months apart. Still in a cast . Has anyone been prescribed Forteo ? Than didn’t get the drugs to maintain bone strength . I’m so upset. A yr of injections and beings the ball was dropped . I’m back at Day 1 . I’m assuming I will be prescribed EVinity . I’m a walking China Doll . Scared to take any of these meds .

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yogagirl57 | @yogagirl57 | Oct 26 5:13pm

\You;re not alone. I am also afraid and clueless as to what to do. I have been prescribed a choice of Tymlos or Evinity.

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1 reply
njx58 | @njx58 | Oct 26 6:19pm
In reply to @yogagirl57 "\You;re not alone. I am also afraid and clueless as to what to do. I have..." + (show)
@yogagirl57

\You;re not alone. I am also afraid and clueless as to what to do. I have been prescribed a choice of Tymlos or Evinity.

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Don't be afraid. Most people take the meds and do fine. There's a selection bias online where you are more likely to hear about bad side effects; the people doing fine don't generally get on the Forum to say so. The key is having a doctor who understands these meds, and knows how to follow one med with another. You have lots of company here, don't worry. We have several Tymlos and Evenity veterans. Start a new thread if you have specific questions.

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1 reply
yogagirl57 | @yogagirl57 | Oct 27 7:46am

Thank you very much with that response. Makes sense.

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susanfalcon52 | @susanfalcon52 | Oct 27 9:27am

I have posted here before that I did fine on Evenity. The first injections did cause some fatigue the day after.
Other than that, easy peasey

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1 reply
4deborahrb | @4deborahrb | Oct 27 12:58pm
In reply to @njx58 "Don't be afraid. Most people take the meds and do fine. There's a selection bias online..." + (show)
@njx58

Don't be afraid. Most people take the meds and do fine. There's a selection bias online where you are more likely to hear about bad side effects; the people doing fine don't generally get on the Forum to say so. The key is having a doctor who understands these meds, and knows how to follow one med with another. You have lots of company here, don't worry. We have several Tymlos and Evenity veterans. Start a new thread if you have specific questions.

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I had almost daily nausea, fatigue and severe orthostatic hypotension on Tymlos. I also had 3 episodes of vertigo. I stayed on it for 4 months and then quit because I just couldn’t go on feeling that way. Everyone is different though so maybe you will have a better experience. The best thing was that the mail order pharmacy checked in with me every two weeks and answered my questions.

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1 reply
sheriv | @sheriv | Oct 27 4:17pm
In reply to @susanfalcon52 "I have posted here before that I did fine on Evenity. The first injections did cause..." + (show)
@susanfalcon52

I have posted here before that I did fine on Evenity. The first injections did cause some fatigue the day after.
Other than that, easy peasey

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Hi Susan
I feel like I messaged you before about Evenity. Are you still on it and has it been ok? Just curious. I am starting the injections next month and am a little nervous. Thanks for any information.

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1 reply
rgibson123 | @rgibson123 | Oct 27 6:47pm
In reply to @windyshores "@bwaykm the studies on Evenity that resulted in a black box warning showed no difference in..." + (show)
@windyshores

@bwaykm the studies on Evenity that resulted in a black box warning showed no difference in risk between Evenity and placebo, and small (considered statistically significant) difference with alendronate. I have seen this latter result explained as because alendronate is slightly protective and also by chance.
You can look up the Arch and Frame studies and ask you doctor to explain.

I have afib with tachycardia and didn't have any heart issues with Evenity (I did have some neuro issues due to lupus).

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I have Lupus too and am curious how it made you have neuro issues?

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rgibson123 | @rgibson123 | Oct 27 6:51pm
In reply to @susanfalcon52 "I did 12 months of Evenity with no problems. Had Reclast infusion a few months ago...." + (show)
@susanfalcon52

I did 12 months of Evenity with no problems.
Had Reclast infusion a few months ago. That went well also.

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How long do you anticipate taking Reclast for?

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1 reply
windyshores | @windyshores | Oct 27 7:09pm
In reply to @rgibson123 "I have Lupus too and am curious how it made you have neuro issues?" + (show)
@rgibson123

I have Lupus too and am curious how it made you have neuro issues?

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@rgibson23 I cannot definitely say any side effects were from Evenity or due to lupus. On Evenity had burning sensations in chest and arm. I have had milder paresthesias before that have never been explained other than vaguely autoimmune with high positives for various antibodies. With Evenity the burning aspect was stronger...previously paresthesias were more tingling.

Most people do fine on Evenity. Many on here report no side effects!

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susanfalcon52 | @susanfalcon52 | Oct 28 6:55am
In reply to @sheriv "Hi Susan I feel like I messaged you before about Evenity. Are you still on it..." + (show)
@sheriv

Hi Susan
I feel like I messaged you before about Evenity. Are you still on it and has it been ok? Just curious. I am starting the injections next month and am a little nervous. Thanks for any information.

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sheriv,
Sorry if I didn’t respond before. I finished 12 months of Evenity. No problems and significant bone improvements.
I’m on Reclast now. Also, trouble free.

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