Connect
Evenity 13th Dose?
I have a recent acute vertebrae fracture of T12 and L1 & L2 previous. In the last 6 weeks I have lost and 1.5 inches in my height, and 8 pounds due to I think, my stomach can't hold much food or I belch terribly. They now want to start me on my 13th dose of Evenity. So I have, headaches at night and small rash at one injection site. Has anyone else had more than 12 doses of Evenity? I had 6 months of Evenity then Prolia and another 6 months of Evenity. They stalled my Prolia, due to dental work, but dentist said no i was not going to have that until Oct. I told PA my bones are more important than my teethe, and the PA gave me nothing and 5 months later i have lost what i gained in bone density and now -3.8, I am in my sixties and until this tragic event I went to the gym apx. 4 days a week and walked with walking sticks for 50 minutes a day. Worked full time, played with Grandkids and very involved in community. I could not drive for almost 5 weeks and barely able to sit in a car. I have always taken the time to take good care of myself. I will also note that in my 50 I had diverticulitis and have had to be dairy & gluten free, but did good substitutes for the lack of dairy. The PAIN is overwhelming. My PT person tried Tens on me and that helped with the pain. They are looking into if I am a candidate for Vertebroplasty? Honestly this scares me for as young as I am. It has risks. I want to look into the stem cell research and I heard good things about Osteo Strong.
Any information or shared experience would be helpful. Thank you. Read everything you can before starting anything, I learned a lot from Dr. Doug his U tube site as well.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
bones1957, Evenity following Prolia is an unusual sequence.
Immediately following Prolia osteoporosis patients are usually given Reclast. Prolia can be difficult to stop because of the risk of rebound fractures. You were only on Prolia for six months but it may be part cause for your fracture. That and their failure to follow up after Evenity.
Prolia and Evenity have risks for osteonecrosis with dental work.
But I'm most afraid that you are still at risk of rebound fracturing from Prolia. Evenity didn't hold the gains, and may not have offered you any protection from the aftermath of Prolia.
You may know that after Prolia your body is swamped with acid producing cells that can cause fracture after fracture; they call them cascade fractures. You should contact your PA. I would try to get on a bisphosphonate right away.
-
Like -
Helpful -
Hug
2 ReactionsI spoke to a representative from Amgen medical ~~ they are gathering data on the side effects of Evenity, etc.
She indicated that 12 months is the length of time that Evenity has proven to be successful.
I also called Evenity 12 continuous doses is the recommended way to treat it.
My PA said that the first 6 months is when most people get the best absorption, so she spaced it to
6 months then Prolia, which she didn't explain to me when I started on Evenity, then 6 months of Evenity. after the first 6 months she said I would have to take Prolia, like a space holder for the gains I made in the bones, but that if I didn't take the Prolia I would loose my bone density 2.5 times faster than I would naturally. So what choice did I have I took the Prolia, then she followed up with the Evenity for 6 months. I then told her don't I NEED the Prolia or I am going to loose my density 2.5 times faster than I would naturally. She then said no we can wait you have a good gains....and it even says on the Evenity warning that if you don't follow vertebra fractures will occur and now they have. This is not right. They also told me only one person had died taking Evenity, so it is safe and the one that died was already at risk, I was a good candidate. I talked with the FDA and they didn't approve Evenity the first round because 19 people had died in 2019.
PS They now decided my only hopefully good option is to start up on my 13 Dose of Evenity. Has anyone had more doses that 12 is my question and how are they doing now?
-
Like -
Helpful -
Hug
2 ReactionsThat is a very valid point. The consensus thought it was best for me to start again on the Evenity, so at this point I did start the Evenity. But I am learning alot. Thank you for your input. I will research that more.
I do feel like a Guinea Pig at this point. And I probably am.
-
Like -
Helpful -
Hug
1 Reactionbones1957, they don't study these osteoporosis medications in guinea pigs, so we are all actually rats.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7284126/ This is a single person study, but my understanding just from reading (I'm not an expert) is that the best you can do for rebound after Prolia is Reclast, and even Reclast isn't always effective enough.
Herein, we report the study extension evaluating 24 months of treatment with[Evenity] romosozumab: https://academic.oup.com/jbmr/article/33/8/1397/7605217?login=false
I think you already know how this goes with Prolia
Prolia prevents the cells that dissolve bone from fully developing. It doesn't make them die or slow their early stage initiation It collects and preserves them in their final stage. As soon as you stop Prolia all those cells mature and cause extensive bone loss. So you developed all those acid producing cells on Prolia and now are taking a medication that is primarily anabolic for six months. And will become primarily antiresorptive in six months. The bottom two frames https://pmc.ncbi.nlm.nih.gov/articles/PMC9106644/figure/Fig3/ indicate the effect on the measurement of CTX a fragment left by the dissolution of bone when following Prolia with Evenity. There were only sixteen participants in the part of the study, so you aren't alone. Except that you weren't on a full year of Prolia, (thank goodness). You may be the very only one with your dosing regimen.
I'm concerned by the consensus. But those experts know far more than I do.
I hope you get relief from the pain. Vertebroplasty can help by sealing the nerves and stabilizing the fracture, but like you say there are risks.
Bless your bones.
-
Like -
Helpful -
Hug
3 ReactionsGently,
This information is extremely helpful and I will study it diligently.
I truly appreciate all of this information!
Blessings Back!
-
Like -
Helpful -
Hug
2 Reactions