Stopping Evenity Early

Posted by melanie1 @melanie1, Sep 17, 2022

I decided to stop Evenity after seven treatments because I seemed to develop increased symptoms of osteoarthritis in knees and hands while on it, in addition to generalized stiffness and joint pain. Has anyone experienced this or stopped Evenity for other reasons before completing 12 treatments?

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I am considering stopping Evenity after 7 of 12 injections for the same reason. I read this is a common side effect. But I am really uncomfortable.
What did your Dr. say.
Did you go onto another medication or choose no meds after that.
Thank you beb

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@bebea5

I am considering stopping Evenity after 7 of 12 injections for the same reason. I read this is a common side effect. But I am really uncomfortable.
What did your Dr. say.
Did you go onto another medication or choose no meds after that.
Thank you beb

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@bebea5 what side effects are you having?

I did Tymlos for 2 years before Evenity so I need to get some tests to see if Evenity is even doing anything. After Evenity I will do Reclast at a low dose at first.

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@windyshores

@bebea5 what side effects are you having?

I did Tymlos for 2 years before Evenity so I need to get some tests to see if Evenity is even doing anything. After Evenity I will do Reclast at a low dose at first.

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Low back pain, hip pain, achiness and still in knee joints

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Yes generalized stiffness and joint pain in hips and low back from Evenity

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Keith McCormick told me that 40% of his patients have joint pain. It makes sense to me that we might have back or joint pain as "growing pains." I don't have that side effect, yet, one week after my first injection.

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@windyshores

Keith McCormick told me that 40% of his patients have joint pain. It makes sense to me that we might have back or joint pain as "growing pains." I don't have that side effect, yet, one week after my first injection.

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Might have Growing Pains?? What does that mean?? Is Kevin McCormick your endocrinologist? Did he tell you that about growing pains??
After one injection you will not begin to feel this side effect. You have 11 more to go.
Wishing you all the best.
beb

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@bebea5

Might have Growing Pains?? What does that mean?? Is Kevin McCormick your endocrinologist? Did he tell you that about growing pains??
After one injection you will not begin to feel this side effect. You have 11 more to go.
Wishing you all the best.
beb

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@bebea5 I don't really intend to do 12 Evenity injections. I was going to do 3-4, as a follow up to Tymlos.

Keith McCormick is the chiropractor/osteoporosis guru often mentioned in this forum. He wrote "The Whole Body Approach to Osteoporosis" and the more recent "Great Bones" (700 pages). He does consults in person and by phone and I use him in addition to endocrinology.

I have done cancer meds and 2 years of Tymlos that both caused joint pains (in addition to lupus and fractures' pain). I have been told and read by several sources that growing bone may cause the kind of growth pains we had in childhood or adolescence. Again, McCormick says that 40% of his patients have that side effect. I am calling Amgen today and will tell them that, along with my own story. Of course it is up to us to decide what to tolerate but it may be a case, for some of us, that "no pain no gain."

My side effects with Evenity's first injections were bad enough (intense chest tightness along bottom of diaphragm, making it harder to breathe, pins and needles all over, anxiety and insomnia) that I am considering not doing more. I am sensitive to an ingredient, polysorbate 20. But only because I already did 2 years of Tymlos with excellent gains.

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Thank you for your shared personal information.
We are all unique and have our own story.
I'm new to this osteoporosis after a hard fall Oct. 2022 while hiking. The fall required knee surgery. Ortho indicated "soft bones" Got a DEXA scan Dec. 2022. Scored -3.9 on hip and -2.9 spine. Started Evenity 7/2023 . Otherwise no other major medical issues, healthy. Very active..outdoorsy..... I truly understand "no pain, no gain" attitude. That's why I'm on Evenity. But I want a better new normal.
Need more guidance/education to make best choice possible.
beb

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@bebea5

Thank you for your shared personal information.
We are all unique and have our own story.
I'm new to this osteoporosis after a hard fall Oct. 2022 while hiking. The fall required knee surgery. Ortho indicated "soft bones" Got a DEXA scan Dec. 2022. Scored -3.9 on hip and -2.9 spine. Started Evenity 7/2023 . Otherwise no other major medical issues, healthy. Very active..outdoorsy..... I truly understand "no pain, no gain" attitude. That's why I'm on Evenity. But I want a better new normal.
Need more guidance/education to make best choice possible.
beb

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I’m glad you took action right away. I had a bad fall onto a side of cliff and shattered my foot which ultimately lead to my diagnosis as well (-2.5 spine and -2.1 hip). That was 15 years ago. My score was fairly stable with minor declines over 13 years until it dropped 5% in the past two years to -3.1 in the spine and -2.5 in my hip. Now I’m struggling with which route to go. I’m leaning towards Forteo but I was hoping to maybe see if I could stabilize first with BHRT but I need to get a catscan of my arteries before taking it as I’m 65 and 17 years post menopausal. I am finally getting to see a top endocrinologist in Toronto next week, so I’m hoping to solidify an action plan as I’m stressed I’m still losing bone while waiting. A young Golden Retriever ran into the back of my legs two weeks ago and I fell hard on my tailbone onto an icy surface. Lots of back pain resulted in me going to get an X-ray and lo and behold I have 3 mild biconcave deformities in my T7, T8, and T9, possibly osteoporoic fractures!

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I honestly miss Tymlos! I keep thinking I am forgetting to do something 🙂 I have problems with just about every med and ramping up on Tymlos saved me.

I'll let you all know if I get info on half dose of Evenity.

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