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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This is from the Japanese Study where the dosage was varied.

"For the primary efficacy endpoint, each dose of romosozumab increased BMD at the lumbar spine significantly compared with placebo at month 12 (Fig. 2 and Supplemental Table S1). The mean percentage increase from baseline was 0.9% in the placebo group and 8.4%, 13.3%, and 16.9% in the romosozumab 70, 140, and 210 mg"

Factor in our smaller weight and the effectiveness of a 105 mg dosage might be approaching being equivalent to a full dose for a 150 lb woman.

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@normahorn

This is from the Japanese Study where the dosage was varied.

"For the primary efficacy endpoint, each dose of romosozumab increased BMD at the lumbar spine significantly compared with placebo at month 12 (Fig. 2 and Supplemental Table S1). The mean percentage increase from baseline was 0.9% in the placebo group and 8.4%, 13.3%, and 16.9% in the romosozumab 70, 140, and 210 mg"

Factor in our smaller weight and the effectiveness of a 105 mg dosage might be approaching being equivalent to a full dose for a 150 lb woman.

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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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@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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Windy: Sounds like you did the right thing based on your dosage analysis. Do let us know how you do after a few days compared to your previous experience.

I think there are quite a few medications that should/need to be calibrated based on weight. Why is this not done?

The medical world seems quite aware about being careful about dosage when there are children involved but that does not seem to carry over to adults. Especially older adults.

One size usually does not fit all.

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@rjd

Windy: Sounds like you did the right thing based on your dosage analysis. Do let us know how you do after a few days compared to your previous experience.

I think there are quite a few medications that should/need to be calibrated based on weight. Why is this not done?

The medical world seems quite aware about being careful about dosage when there are children involved but that does not seem to carry over to adults. Especially older adults.

One size usually does not fit all.

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I think the syringes are prefilled. I would speculate that Amgen used the dose that is effective for almost everyone but that leaves us smaller folk with a larger dose, basically. It would be expensive for them to provide a variety of prefilled syringes based on weight, even though the studies I have seen did base dosages on kg/s.

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@windyshores

I think the syringes are prefilled. I would speculate that Amgen used the dose that is effective for almost everyone but that leaves us smaller folk with a larger dose, basically. It would be expensive for them to provide a variety of prefilled syringes based on weight, even though the studies I have seen did base dosages on kg/s.

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You might think the FDA should have a role in all this. I am sure Amgen aims to minimize expense but the FDA should be concerned primarily about consumers.

You are so extraordinarily well informed on this issue, I hope you have found a channel of communication with the FDA?

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The fact that the dosage comes in 2 syringes makes me think that part of the consideration is allowing for administration of half dosages. Amgen may not be allowed to outright authorize it but effectively did so in a roundabout way.

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@normahorn

The fact that the dosage comes in 2 syringes makes me think that part of the consideration is allowing for administration of half dosages. Amgen may not be allowed to outright authorize it but effectively did so in a roundabout way.

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Not sure about that @normahorn. It may be that the Evenity dose just doesn't fit in one syringe.

I called Amgen and they do not authorize a half dose. I am going to call them again because basing dose on 150 lbs is not fair and their own info says exposure goes up as weight goes down. I think they should have markings on the syringes so we can do 3mg/kg as was done in the studies.

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@rjd

You might think the FDA should have a role in all this. I am sure Amgen aims to minimize expense but the FDA should be concerned primarily about consumers.

You are so extraordinarily well informed on this issue, I hope you have found a channel of communication with the FDA?

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@rjd I corresponded with MedWatch and then Amgen called me and my doctor. But I have more to say at this point!

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Think about the woman who weight 82 lbs. Full dose would be asinine for her to take.

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