Update on post Evenity treatment

There are two small studies supporting using Evenity beyond a year and or repeating Evenity. My doctor has a small number of patients doing that and I intend to do that also after a year or so off of Evenity. I'm using monthly Risedronate in the interim. Insurance and money are issues unfortunately, but I hope to manage that somehow. My doc also suggested just using it for 6 months next time saying there was a Korean study that showed that you got most of the results from Evenity in 6 months. I intend to do whatever I have to do to have another round and get more gains in density.
As anecdotal evidence for Evenity I took a wrong turn in the dark recently and fell wildly down our basement stairs. I wrenched my foot and knee but broke nothing. That was quite an experience. Of course I don't know for sure what would have happened if my spine still had vertebra lower that -4.0, but I'm definitely glad I had all the density improvements from Evenity before I took that tumble.

BTW, I participated in that Inspire discussion that @19kcm56 mentioned. I'll post what I said there here:

"I found two relevant articles. In one they did two years of Evenity consecutively and in one they did a year of Evenity, then a gap of nothing and then another year of Evenity. There are other things going on in both these studies so you have to find the particulars of interest to you but both are highly relevant and encouraging.

In the first study there was continued benefit for the second year even though everyone says you can only take it for one year. The benefits did slow down but did not stop. No extra safety concerns found for second year.

In the second study more relevant to your situation the second year of Evenity following a 1 year gap was almost exactly as effective as the first. That one says no new safety concerns in second year.
The two years consecutive study:
https://pubmed.ncbi.nlm.nih.gov/29694685/
The 1 year, gap and then another years study:
https://link.springer.com/article/10.1007/s00198-019-05146-9
"
Best of luck to you

The one study compares people on Prolia after Evenity, then back on Evenity, and their gains were minor (around 2.3%). Since I am on Prolia now, if I had to pay the outrageous cost of Evenity again ($450 co pay per monthly injections) I’m not sure it would be worth it for that small of a gain. Still worth mentioning to my doctor.

I didn't remember the improvement figures with Evenity if it followed Prolia but I did remember that it was not great. That's one of many reasons I chose not to go on Prolia. I chose Risedronate because there is some thinking that it will interfere less with a second round of Evenity. BTW both traditional Medicare and sometimes Amgen's Safety Net program will pay 100% of the cost of Evenity.

There are two small studies supporting using Evenity beyond a year and or repeating Evenity. My doctor has a small number of patients doing that and I intend to do that also after a year or so off of Evenity. I'm using monthly Risedronate in the interim. Insurance and money are issues unfortunately, but I hope to manage that somehow. My doc also suggested just using it for 6 months next time saying there was a Korean study that showed that you got most of the results from Evenity in 6 months. I intend to do whatever I have to do to have another round and get more gains in density.
As anecdotal evidence for Evenity I took a wrong turn in the dark recently and fell wildly down our basement stairs. I wrenched my foot and knee but broke nothing. That was quite an experience. Of course I don't know for sure what would have happened if my spine still had vertebra lower that -4.0, but I'm definitely glad I had all the density improvements from Evenity before I took that tumble.

BTW, I participated in that Inspire discussion that @19kcm56 mentioned. I'll post what I said there here:

"I found two relevant articles. In one they did two years of Evenity consecutively and in one they did a year of Evenity, then a gap of nothing and then another year of Evenity. There are other things going on in both these studies so you have to find the particulars of interest to you but both are highly relevant and encouraging.

In the first study there was continued benefit for the second year even though everyone says you can only take it for one year. The benefits did slow down but did not stop. No extra safety concerns found for second year.

In the second study more relevant to your situation the second year of Evenity following a 1 year gap was almost exactly as effective as the first. That one says no new safety concerns in second year.
The two years consecutive study:
https://pubmed.ncbi.nlm.nih.gov/29694685/
The 1 year, gap and then another years study:
https://link.springer.com/article/10.1007/s00198-019-05146-9
"
Best of luck to you

I didn't remember the improvement figures with Evenity if it followed Prolia but I did remember that it was not great. That's one of many reasons I chose not to go on Prolia. I chose Risedronate because there is some thinking that it will interfere less with a second round of Evenity. BTW both traditional Medicare and sometimes Amgen's Safety Net program will pay 100% of the cost of Evenity.

I have Medicare Advantage, because I am on a bunch of meds and can’t afford premiums for Medicare, Part D, and a Medicare supplement (which I would need to get meds and everything else fully covered). Medicare Part B does not pay 100%, they only pay 80%, which is what my Advantage plan covered. Amgen financial aid won’t help if you have my insurance plan, I checked.
I was on Actonel for years, I started doing Prolia because my endo said it can potentially increase bone density further, rather than just keeping it where it is, and I was hoping I would get that outcome. So far I have not.

Hi @awfultruth, for your second round of Evenity, is your insurance open to covering it? And how are you thinking about timing the start - would you wait for your bone markers to bounce back a bit from their current suppressed state first? If so, what level of CTX are you keeping an eye out for?

@awfultruth

WOW, I'm so sorry to read about your fall, thankful that you're ok!!

I had very good results from Evenity, and glad I gave it a try.
2023
L1-L4. -3.1
Lt Hip femoral neck -3.0
Lt Hip total
-2.8

2024
L1-L4. -1.8 (19.6) increase
Lt Hip femoral neck -2.2 (14.1) increase
Lt Hip total
-2.2 (11.4) increase
My TBS also improved, and I went from osteoporosis to osteopenia.

I'm still concerned about the -2.2 in the Hip. Have an endo appt on Sept 4. to start on either Reclast or Fosamax.

Very pleased with Evenity. Best wishes to everyone.

@mayblin Hi there.
I have no idea if Medicare will cover a second round of Evenity. There are several factors involved. One being what will my next DXA show. Will Risedronate have kept my Evenity gains or even improved my scores, or will I have lost some of my gains? I went from a worst of -4.1 in my spine to a worst of -2.1 with round one of Evenity. My only score in the osteoporosis range after Evenity was a -2.5 in my femoral neck. Will Medicare see that as bad enough to cover Evenity? Will Medicare even cover Evenity twice - I just don't know.

Also, my wife and I have moved across country so I have to get a new doctor probably. Though perhaps it could go thru the doctor I've been using for years but administer it myself? So many complications.

As to CTX levels. My CTX seems to go up rapidly just several weeks after my monthly Risedronate pill. After I observed this I took the monthly Risedronate every two weeks for a bit and now I'm varying it between 3 weeks and a month. That last part is not due to strategy but the unsettledness of my life after fleeing the California fires and trying to settle in a new place.
It looks like my CTX levels will rise about 200 pts between 2 weeks after the Risedronate to 4 weeks after. Like from 190 to 390 for example.
So looking at that, I think I could take Evenity one to two months after the last Risedronate? Any time I get up around 400 I guess. I will also ask my doctor what he thinks.
Thanks for asking as I've got to get moving on all this.

@rola Glad to hear your great results with Evenity. That hip improvement is terrific. The fall down the stairs was crazy but I do like knowing I'm not nearly as fragile as I feared I might be. I have put a night light at the top of the basement stairs so I hopefully will not step off into darkness again.
Wait, what have you been taking since you stopped Evenity?