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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@windyshores

I went in for my second Evenity today and declined the second shot. The nurse said they have people stop early at 6 months, but not sooner.

Here is what I wrote elsewhere about today and my decision:

I had met with an allergist at the request of my endo. Allergist said I should pause between shots to ascertain effect before having second one. Nurse said I could only have a one minute pause. I got her to wait three. I decided against the second injection. Thigh injections are absorbed more slowly that tummy. By the time I got to my car, same burning band of tightness in mid abdomen, but more tolerable than two injections last month (which had an intense effect w/in a minute).

I read initial studies that based dose on weight. Standard dose is 3mg/kg for someone 150 lbs. I weigh 104. Essentially 3mg/kg would be about 140mg Evenity. One shot is 105mg, two shots is 210mg. Basically I got 2m/kg with one shot versus standard 3. That was reported as 1/3 less effective but still pretty good. Basically 10% increase vs 16% (see post above by @normahorn).

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People are smart to stop at 6 mos! I asked about it but was told any muscle
And joint pain I had were not related and I wasn’t proactive enough to stop.

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@lauratys

People are smart to stop at 6 mos! I asked about it but was told any muscle
And joint pain I had were not related and I wasn’t proactive enough to stop.

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I would have done more honestly. But I already had excellent gains from Tymlos and Evenity was causing some unpleasant sensations. There is an argument to do 4-6 months (depending on P1NP) to get the bone building part of Evenity and there is a study seeing whether Reclast can be started then rather than at 12 months.

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@windyshores

I would have done more honestly. But I already had excellent gains from Tymlos and Evenity was causing some unpleasant sensations. There is an argument to do 4-6 months (depending on P1NP) to get the bone building part of Evenity and there is a study seeing whether Reclast can be started then rather than at 12 months.

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@windyshores can you tell us anything else about this study?

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@cat1203

@windyshores can you tell us anything else about this study?

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@cat1203 I will try to find it later. There were several permutations of timing with Evenity and Reclast.

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Hello, I stopped Evenity after 10 months. After my bone density test results showed, extremely worst. From 2.5 FRANK stage. Which is really bad according to my doctor. Also have arthritis in my knees, back and hands. Didn't feel any better and the cost per dose, were appr $125-$600.

Currently using holistic and more exercise to improve bone strength.

Good luck with your journey.

SBCHER

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@sbcher what does this mean? Are you saying your bone density got worse on Evenity and that your DEXA was -2.5?

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@windyshores

@sbcher what does this mean? Are you saying your bone density got worse on Evenity and that your DEXA was -2.5?

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Yes. My bone density got worse using Evenity.

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@sbcher

Yes. My bone density got worse using Evenity.

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What were your starting DEXA and ending DEXA scores after Evenity?

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@ripley

What were your starting DEXA and ending DEXA scores after Evenity?

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My starting point 1 year previous T score was -2.4 after Evenity 10 months it was -4.3 Frank stage

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@windyshores

@sbcher what does this mean? Are you saying your bone density got worse on Evenity and that your DEXA was -2.5?

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Yes it did. My starting point 1 year previous T score was -2.4 after Evenity 10 months it was -4.3 Frank stage.

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