Evenity - My Email to FDA

I have taken Evenity and am currently on Prolia. They now want me to go on Forteo. This concerns me because they can cause a stroke, heart attack, or cancer. Has anyone taken all of these?

@lindarent none of these meds have caused cancer. Forteo and Tymlos originally had a black box warning that has since been removed since not a single human has gotten cancer from these drugs. There is still some outdated info on this online but you can check the current drug sites.

Regarding the stroke/heart attack are you referring to Evenity? You have finished, right? The ARCH and FRAME studies showed no difference between Evenity and placebo for cardiovascular risk, and a small but statistically significant difference with alendronate, which may be because that is somewhat protective, according to articles I have read. In any case, I have never heard that Forteo causes stroke or heart attack.

The biggest concerns, I think, in your situation, according to McCormick's book "Great Bones, " Dr. Beb Leder's video on YouTube "Combining and Sequential Approaches to Osteoporosis," and my own endocrinologist are:

1) Forteo will not help with the rebound when you stop Prolia, which can quickly reduce bone density and increase fracture risk. My doc would have you do Reclast (Or if you have only done a few Prolia shots, maybe Fosamax).

2) According to those sources Forteo is not effective after Prolia. Check this with your doctor. Are you seeing an endocrinologist?

Thank you for your comments. What I am mainly concerned about is taking all three drugs. I’ve had 12 treatments of Evenity, then one treatment of Prolia, and now want me to take Forteo. That just seems like an overdose.

@lindarent sorry I don't understand. I have taken Tymlos, Evenity and Reclast.

The medications you name are all different, with different mechanisms. So you aren't getting too much of any one medication, just a sequence. Most of us have to take at least two or three medications because there is a need to "lock in" gains from our first drugs.

If you have only done on Prolia, you could follow it with Fosamax or maybe Evenity if your doctor wants more bone built. Maybe Forteo would be effective after only one Prolia. I don't know, and your doctor can guide you.

But you have to do something to "lock in" gains after Tymlos, Forteo, Evenity and especially Prolia. As I wrote, most of us "lock in" with a bisphosphonate but your doctor can guide you.

I think I understand. When we are initially presented with a treatment, I do not believe that our practioners fully explain that we are starting a lifetime of osteoporosis drugs. I know I had to push to get the scope. Only be joining Connect did I grasp what this entails. Transparency upfront would build trust.

@lindarent may be able to take Reclast 1-3 times and take a long drug holiday. Since her MD wants Forteo (which would not be advised by many, after Prolia) it seems that her bone density is still not good.

Are we committed to a lifetime of drugs because we started one, or because our bones are bad? I think the latter since we can "lock in" gains with a bisphosphonate that lasts a long time in the bones. But interested in what others think.

@normahorm are you suggesting it is better not to start? Or to "treat to target"?

I can see that for sure with mild osteoporosis, drugs might be avoided, and hope doctors are no longer prescribing for osteopenia. For those of us with fractures or severe bone density loss, there isn't much choice. It appears that @lindarent is unfortunately in the latter group but I could be wrong.

I do not understand the objection to wanting doctors to display honesty and integrity from the very beginning. Don't start a patient on a medication only later to tell them that another and another is, or may be, needed. Say up front that the goal is to treat to get a patient out of osteoporosis, if possible, and that may require multiple treatments. Don't hide that and expect me to have any trust in that doctor. Let the patient make an informed decision and not be deceived. And don't then fallback on supposed "protocol" and overdose. I want the minimum expensive, toxic chemicals put in my body that will accomplish the goal.

@normahorn I don't think that starting a medication means a lifetime of drugs. Though osteoporosis, if severe enough, may mean long term treatment. That's all.

Of course doctors should be upfront about the need to do follow-up to "lock in" gains but it is hard to predict, at the start of treatment, what will be needed in the future. To be frank, I don't think it is an honesty issue. I don't think they know. Noone seems to know how to treat this over the decades some of us may have. They actually say "We don't know."

The sequence @lindarent describes has one problem : Forteo after Prolia. Her doctor's problem seems to be something besides honesty and integrity. The sources I have (Leder and McCormick, and my doctor) say that Forteo won't prevent rebound and also won't be effective after Prolia- two things that are actually related.

@lindarent,
osteoporosis requires continued treatment. The bone strengthening effect of all of the medcations declines when you stop taking them. Prolia is the most devastating to stop--without a following drug you'd be worse off than if you'd never taken it.
We keep changing medications because they all be come less effective at some point during treatment.
Forteo is my favorite of all the medicatons. It isn't suspected of causing stroke, heart attack or cancer.
Though you've only taken one injection of Prolia, it might be good to take a bisphosphonate for several months before Forteo. Prolia prevents the bone from breaking down by stopping cell that break bone down from fully developing. But after you stop Prolia those collected underdeveloped cells mature. They can devastate your bone. So we are advised to take a medication that specifically targets those cells.
Many of us have taken all three medications and will rotate back through them a second time, but only because we are afraid of fracturing.

I also have taken Evenity and now Prolia which I will take up to 3 injections and then Reclast . I am following the advice of my endocrinologist and McCormick’s.
It’s not an easy process and hopefully no side effects. I just don’t want to lose all that I have gained from Evenity and to continue in improving my BMD .