Side Effects of Evenity?

Posted by bradford14design @bradford14design, Nov 4 10:33am

I had my 11th injection of Evenity last week. I asked the nurse if any other patients receiving Evenity complained of side effects. He said no. I find this very hard to belive. Would love to hear from those who have experienced side effects.
Mine were mostly felt 12 days after the shots.
Foggy brain for 2-3 days
Low energy
Off balance
Sleep issues
Itchy arms- one time after shot
Red face- a few hours after the shot

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I’m so scared to take medication because with my bad back, I’d get a side effect. Haven’t fractured and didn’t even when I fell. My dexa did increase from-4.2 to -4 in a year.

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@jolie2525

I’m so scared to take medication because with my bad back, I’d get a side effect. Haven’t fractured and didn’t even when I fell. My dexa did increase from-4.2 to -4 in a year.

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@jolie2525 that is a pretty severe DEXA score. A change of +.2 isn't statistically significant, I have been told. My numbers have jumped around a bit over the years so I was told anything more or less than -.5 is a significant change.

In my experience Tymlos helped my back pain but I am an anecdote of one. As someone who now has 6-7 spinal fractures I can say that your back will most likely hurt a lot more after fractures than after some of these meds!

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I had Evenity for 5 months I immediately felt pain on my left hip I returned to the doctor 4 times due those 5 moths he said it was nothing…maybe “constipation” the pain became unbearable I ended up on the ER where I was diagnosed with Osteonecrosis on both my hips I had no choice but to get surgery and I’m miserable in pain all the time on my bones throughout my body 🙁

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@windyshores

@jolie2525 that is a pretty severe DEXA score. A change of +.2 isn't statistically significant, I have been told. My numbers have jumped around a bit over the years so I was told anything more or less than -.5 is a significant change.

In my experience Tymlos helped my back pain but I am an anecdote of one. As someone who now has 6-7 spinal fractures I can say that your back will most likely hurt a lot more after fractures than after some of these meds!

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I meant bad luck! So not sure I should get medication

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@jolie2525

I meant bad luck! So not sure I should get medication

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@jolie2525 it sure would seem that you need medication. I have "bad luck" with just about every medication but Tymlos worked for me. I tried a full dose and could not tolerate it, so used the adjustable dosing on the pen to start at 25% dose and moved up to almost a full dose. I have several fractures and come on here to tell people they can be painful and disabling. I was literally crawling on the floor, and even 4 years later, cannot lift much, which means I have lost some independence. Forteo is similar to Tymlos but lower dose. Evenity is very potent and most people seem to do fine on it. I hope you will try a medication! If not, maybe a physical therapist could work with you on avoiding fractures. Still, at the -4 range, thre is danger in sneezing and hugging!

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@cuzco1968

I had Evenity for 5 months I immediately felt pain on my left hip I returned to the doctor 4 times due those 5 moths he said it was nothing…maybe “constipation” the pain became unbearable I ended up on the ER where I was diagnosed with Osteonecrosis on both my hips I had no choice but to get surgery and I’m miserable in pain all the time on my bones throughout my body 🙁

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@cuzco1968 this necrosis of the hip is very concerning. I looked it up and it is loss of blood supply to the hip. These are listed causes:
Osteonecrosis occurs when blood flow to a bone is blocked or reduced. https://www.mayoclinic.org/diseases-conditions/avascular-necrosis/symptoms-causes/syc-20369859

Apparently long term use of bisphosphonates can cause necrosis, and Evenity is also anti-resorptive in the last months, mildly so- but you only did 5 months. Mayo says it takes weeks to years for necrosis to develop. Is your doctor attributing it to Evenity? I hope you will report this to the FDA Medwatch so that connection can be evaluated. They will ask your permission to call your doctor https://www.fda.gov/safety/medical-product-safety-information/medwatch-forms-fda-safety-reporting

Were you on a bisphosphonate or Prolia in the past?

This article says that osteoporosis itself can cause necrosis so maybe it will be hard to pin blame on Evenity. We patients need to know!
https://my.clevelandclinic.org/health/diseases/14205-avascular-necrosis-osteonecrosis
Interesting that osteoporosis drugs are mentioned as treatment
https://www.mayoclinic.org/diseases-conditions/avascular-necrosis/diagnosis-treatment/drc-20369863 It doesn't say which drugs!

I hope that there is treatment for you and that your pain finds some relief!

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@windyshores

@jolie2525 it sure would seem that you need medication. I have "bad luck" with just about every medication but Tymlos worked for me. I tried a full dose and could not tolerate it, so used the adjustable dosing on the pen to start at 25% dose and moved up to almost a full dose. I have several fractures and come on here to tell people they can be painful and disabling. I was literally crawling on the floor, and even 4 years later, cannot lift much, which means I have lost some independence. Forteo is similar to Tymlos but lower dose. Evenity is very potent and most people seem to do fine on it. I hope you will try a medication! If not, maybe a physical therapist could work with you on avoiding fractures. Still, at the -4 range, thre is danger in sneezing and hugging!

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Thank You hope you’re getting better.

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@jolie2525

Thank You hope you’re getting better.

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@jolie2525 Tymlos took me from severe to borderline osteoporosis. Forteo and Evenity have similar results for many.

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I tried Tymlos for 4 months but unfortunately I had bad knee pain so had to stop. The price for Evenity is $500 a month and can’t afford it. Not sure what medication is best after that.

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