Evenity Side Effects

Hi Windy.
I get that Evenity is not dose adjustable other than you could half it. I happen to be rather average weight so I just forgot about this point.
As to the longer half life than Tymlos or Forteo that could be a negative or a positive. For me I clearly did not want to give myself injections every day. I have had the experience many times in my life of doing better with more substantial efforts, doses, exposures than with smaller, weaker, milder but frequent exposures. That has been true for me with food sensitivities and with anxiety and conditioning. I once chose to get all my mercury fillings out in one visit rather than the 4-12 visits one "safe" alternative school of thought believed was best. That worked well for me. Based on my life experience, for myself, a daily injection increases my odds of starting to have reactions both of a physical nature and of starting to fear having to give myself the injection.

I'm not saying this to argue that my viewpoint is better than yours. Just thought it was interesting that one persons negative point could be another's positive point. For me I think of a monthly injection as likely to be the sweet spot. I'm nervous about doing the yearly Reclast infusions as a follow up to Evenity. Yearly is where my fears start to kick in big time.

One last point. You are the only person I've seen saying you can't take Tymlos or Forteo after Evenity. I'm going to have to see more evidence on that one. I hope it's not correct.

Whatever you do, whether you continue Evenity or not I hope it works out for the best for you.

@awfultruth this forum is helpful for the way it offers different viewpoints!

I have talked to Amgen and my doctor about taking half a dose of Evenity and they say no. So I probably won't take it again.

Well, that's good information for us to have but I'm sorry it cannot be adjusted to help in your situation. One size fits all is a very strange idea for such powerful medications. And "very strange" is probably way too polite a way to describe how they are doing this.

Awfultruth, I couldn't agree with you more. I was on Evenity for 6 months and had side effects that included brain fog, fatigue, random muscle spams and, worst of all, a significant spike in blood pressure 3 to 4 days after the injections. I forgot to mention headaches. Because of the 2 week half life, your body never completely gets rid of Evenity before it's time to get the next dose. It makes sense that side effects will increase over time for those who are sensitive. The clinical trials were done with 2 injections. I'm sure Amgen will never approve a 1 injection dose since they have no data regarding its effectiveness. If they did, I would be open to another try.

@me49 I called Amgen and they said no to one injection. My doc offered to look into it. I am talking to McCormick and trying to talk to my doc this coming week. I suppose I could just refuse the second shot.

I have an appointment for Evenity second dose AND an appointment for Reclast at this point. This is the rock and a hard place we are in!

I don't recall Amgen giving me a hard "no" when I asked them. It seems like I was told they can not give permission for using only one syringe but that I should discuss with my doctor.

@normahorn my doc wanted me to ask Amgen and Amgen referred me to doctor 🙂 I agree not a hard no, but I needed a yes to bring back to doc. Of the two, I think the doctor has more discretion honestly.

The dosage selected for the trial, I am sure, was intended to maximize the benefit for the most people while minimizing the adverse effects. However, some of us are not your average people. The average woman now weighs 170 lbs. I weigh 100 lbs. How do we get the members of the medical field to recognize that!
I think I will call Amgen again and ask if there is any data indicating that half dosage would not be effective or in any other way counter indicated. I am willing to accept a reduced effectiveness if that means I can participate in the program. My NP is willing to go with half dosage but only for the first 2 months. I want the ability to be able to continue at that level depending on how the first injections go. The automated system for the health network has labelled me as malnourished which might pose a liability issue for the NP if she insists on a one-size-fis-all approach

@windyshores i saw this comment of yours just now. I haven’t been following this forum closely lately, but it sounds like you might cut short with evenity treatment for whatever reason?

I came across this article in which the author described some phase I and phase II results of romodozumab. One of the trial has dosing 70, 140 and 210mg monthly. It appears the data of these different dosing are pooled. BUT a Japanese trial with 70, 140, 210mg showed increasing effects on bmd with increased dosage. I believe the referencing article they gave is 10.

I’m not very versed in reading scientific paper, but the above is what I can gather roughly.

If your physician is willing to consider based on Japanese trial results, you might have a chance of halving your dose. Of course there might be lots of other published paper out there regarding dosing in RCT.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7809324/#bibr4-8755122520967632

If I read that correctly, the adverse affects were the same for all 3 dosages. Not what I wanted to hear but that was for the aggregate and not broken down by weight.