1. < Osteoporosis & Bone Health

Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

windyshores | @windyshores | Sep 24, 2023
In reply to @artisan3 "Many years ago, I had a bad reaction to Bonita and Fosamax, so they put me..." + (show)
@artisan3

Many years ago, I had a bad reaction to Bonita and Fosamax, so they put me on Evista(daily).
My Endocrinologist wants me to do Evenity then Prolia and I absolutely do not want to do Prolia for the rest of my life.
I just turned 70, 5’4”, 125 lbs, have always been very active. My spinal is -3.1.
I am very concerned about the side effects of all these drugs (which is just going to slow me down) and the cost, as well. I just don’t want to become another sheep in the pharmaceutical flock. I have an appointment with my doctor on Wed. I really don’t know what to do.

Jump to this post

@artisan3 you can do Reclast or another bisphosphonate after Evenity to "lock in gains." I have been told that I might be able to take a medication break after one or two infusions of Reclast following Tymlos, with adequate monitoring. Prolia is difficult to get off and according to my docs and McCormick's new book "Great Bones," the process of getting off requires careful timing of transition to Reclast to avoid sudden bone loss.

REPLY
1 reply
gravity3 | @gravity3 | Sep 24, 2023
In reply to @artisan3 "Many years ago, I had a bad reaction to Bonita and Fosamax, so they put me..." + (show)
@artisan3

Many years ago, I had a bad reaction to Bonita and Fosamax, so they put me on Evista(daily).
My Endocrinologist wants me to do Evenity then Prolia and I absolutely do not want to do Prolia for the rest of my life.
I just turned 70, 5’4”, 125 lbs, have always been very active. My spinal is -3.1.
I am very concerned about the side effects of all these drugs (which is just going to slow me down) and the cost, as well. I just don’t want to become another sheep in the pharmaceutical flock. I have an appointment with my doctor on Wed. I really don’t know what to do.

Jump to this post

I took, never wanted to be part of supporting the pharmaceutical I dustrial complex. However, I .just also say I am grateful for some other drugs that help me. I can't imagine it having the choices. As for the difficulty of these choices I refer us to the Jungian therapist Marion Woodman who spoke of "holding the tension of the opposites".

REPLY
sandrajhunt | @sandrajhunt | Sep 24, 2023

I understand those feelings EXACTLY. The doctors frighten me about the possibility of having a bad compression fracture. But at this point I am equally frightened of the possible drug side effects. While my last bone density test showed a -3.4 in my lower spine the statement at the end of the report said “10 year probability of major osteoporotic fracture is 10%. “ That is a 90% probability of no fracture. Yet the doctor insists I need to be on osteoporosis meds. I know how generous pharmaceutical salespeople are to doctors who prescribe their drugs and I know their companies make billions from osteoporosis drugs. I don’t want to be one of those “sheep” either. This is way more stress than I want to have in the last chapter if my life!

REPLY
2 replies
artisan3 | @artisan3 | Sep 24, 2023
In reply to @windyshores "@artisan3 you can do Reclast or another bisphosphonate after Evenity to "lock in gains." I have..." + (show)
@windyshores

@artisan3 you can do Reclast or another bisphosphonate after Evenity to "lock in gains." I have been told that I might be able to take a medication break after one or two infusions of Reclast following Tymlos, with adequate monitoring. Prolia is difficult to get off and according to my docs and McCormick's new book "Great Bones," the process of getting off requires careful timing of transition to Reclast to avoid sudden bone loss.

Jump to this post

I have concerns about Reclast because it is a bisphosphonate, like Fosamax. I had a bad reaction to Fosamax and Bonita.
I guess I’d rather take a chance on Reclast, given only once a year, rather than be saddled to Prolia.

REPLY
artisan3 | @artisan3 | Sep 24, 2023
In reply to @sandrajhunt "I understand those feelings EXACTLY. The doctors frighten me about the possibility of having a bad..." + (show)
@sandrajhunt

I understand those feelings EXACTLY. The doctors frighten me about the possibility of having a bad compression fracture. But at this point I am equally frightened of the possible drug side effects. While my last bone density test showed a -3.4 in my lower spine the statement at the end of the report said “10 year probability of major osteoporotic fracture is 10%. “ That is a 90% probability of no fracture. Yet the doctor insists I need to be on osteoporosis meds. I know how generous pharmaceutical salespeople are to doctors who prescribe their drugs and I know their companies make billions from osteoporosis drugs. I don’t want to be one of those “sheep” either. This is way more stress than I want to have in the last chapter if my life!

Jump to this post

Perfectly said! Please don’t think I am knocking pharmaceutical companies. They have produced miracles for millions of people. I am only speaking of my own personal experience, with the osteoperosis.
I looked into Tymlos and Forteo and looks like I would have a large copay. Checked out the assistance and don’t think I qualify. I am calling Medicare tomorrow to discuss options.

REPLY
sandrajhunt | @sandrajhunt | Sep 24, 2023

I understand, and I also am not knocking pharmaceutical companies. They save millions of lives. But i also understand that they are a business . The doctors and scientists and researchers are heroes and i believe people who truly care about saving lives. I think perhaps the business people who run the companies might be a bit profit driven.

REPLY
pedsnurse61 | @pedsnurse61 | Sep 24, 2023
In reply to @sandrajhunt "I understand those feelings EXACTLY. The doctors frighten me about the possibility of having a bad..." + (show)
@sandrajhunt

I understand those feelings EXACTLY. The doctors frighten me about the possibility of having a bad compression fracture. But at this point I am equally frightened of the possible drug side effects. While my last bone density test showed a -3.4 in my lower spine the statement at the end of the report said “10 year probability of major osteoporotic fracture is 10%. “ That is a 90% probability of no fracture. Yet the doctor insists I need to be on osteoporosis meds. I know how generous pharmaceutical salespeople are to doctors who prescribe their drugs and I know their companies make billions from osteoporosis drugs. I don’t want to be one of those “sheep” either. This is way more stress than I want to have in the last chapter if my life!

Jump to this post

I agree with the statement that MD's do get compensated for prescribing medications. That is why this is a difficult decision to make for all of us. In my case the thought of me not being able to care/play with my ( 27 pound) first Grandson because of a spinal compression fracture really frightened me. I went to more than one specialist who all agreed I needed to be on something. As I have stated in other posts no medication has ever helped me. My new Endocrinologist said basically " It's better to be on some medication to hopefully prevent a fracture". Every medication has risks, but the thought of a fracture either in my hips or spine would be a lifetime of pain and complete change of lifestyle for myself and my family.

REPLY
kristie2 | @kristie2 | Sep 24, 2023
In reply to @sandrajhunt "I feel the same way. I am 76, and even though the osteoporosis in my lower..." + (show)
@sandrajhunt

I feel the same way. I am 76, and even though the osteoporosis in my lower spine is in the “severe” range, I question whether the possible benefits of drugs outweigh the possible, and sometimes really awful, side effects. I can’t seem to make a decision.

Jump to this post

I am just curious since you said severe for your spine what is your T score ? Mine is -4.6

REPLY
sandrajhunt | @sandrajhunt | Sep 25, 2023

It is -3.4 but that was two years ago. I will get a have a bone density scan when i go for my annual checkup in January

REPLY
ann707 | @ann707 | Sep 25, 2023
In reply to @lauratys "I literally was too concerned to take Reclast after my Evenity experience. I was told that..." + (show)
@lauratys

I literally was too concerned to take Reclast after my Evenity experience. I was told that out of 8k people that have used Evenity in the practice I go to that I was "the only one" who had the pain like you and I have experienced. I picked up a prescription for Actonel yesterday as the Fosomax started up the same joint/muscle pain I had with Evenity. Frustrating but I'll keep trying as I have to do something to keep the Evenity gains that actually were only significant in my spine. Had a DEXA last week, 6 months after stopping Evenity and spine has gone from -2.1 to -2.3 while I was taking Fosomax. Spine was -3.8 before Evenity. Actonel historically does not cause the muscle aches as much. Being hopeful!

Jump to this post

I had taken Reclast before without any reaction so I thought it would be ok.
Post how the actonel works out for you.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.