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.

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callalloo | @callalloo | Apr 21, 2022
In reply to @dolan "I guess I haven't heard of this new medication. At 37 I fractured my T9 raising..." + (show)
@dolan

I guess I haven't heard of this new medication. At 37 I fractured my T9 raising my arms over my head and from there eveything snowballed. Had my first DEXA scan which showed extreme minus numbers for hips and spine. Continued to fracture bones with normal movement. Pre-menopausal. Started on Fosamax daily(I think. It was so long ago). Worked some but wouldn't sustain. On to Forteo. LOVED the bone growth with this. I gave myself injection daily for 2 years. That is the limit on Forteo. At the same time I was doctoring at Mayo with these bone issues, spots on body, elevated WBC...(diagnosed in 2005 with Systemic Mastocytosis which I gave myself 3 shots a week of Interferon for 3 years) I then went on to Fosamax to sustain the new bone from Forteo. That did well. My doc decided that since I had started so early in my years that I should have a drug 'holiday'. It was almost 4 years when I fell on ice and fractured my pelvis in 5 spots. THE WORSE EVER. 1 week hospital, 3 weeks transitional care. Home to a 4 level home with a walker and crutches. On to Prolia and my endocrinologist says will be my go to for 'ever'. I am now almost 66. I continue to have DEXA scan every 3 years, And Prolia every 6 months. Had 2 minor stress fractures in my ankles last summer. Wore a gel brace on one and that got better and a boot on the other. Stepping off curbs, dip in the yard, ice(live in North Dakota)....frighten me daily.

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Did the medical community have any idea why you such loss of bone that early in life? I'm reading a lot about bone health and it seems as if medical science is still learning a lot about the whole renewal cycle for healthy bones

Hopefully girls today will have better osteoporosis prevention drug choices as all of the current ones have some issues. I wish we could make young girls, many of whom are starving to achieve the bodies of 'influencers' whose bodies are more likely the result of cosmetic surgery, really care about the consequences of eating disorders while they are in their prime bone-growth years but I digress.

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1 reply
callalloo | @callalloo | Apr 21, 2022
In reply to @mjdnanny "I have received Evenity for 10 months but now we are living almost 4 hours from..." + (show)
@mjdnanny

I have received Evenity for 10 months but now we are living almost 4 hours from home for the next few months and my doctor has tried to refer me to someone locally to complete the 12 month course but not able to find anyone. So I would like to know the difference in effectiveness for 10 months of treatment versus the full 12 months. If necessary I could drive home for the shots. I can't find any information to help me with my decision.

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You might call the manufacturer for some suggestions. They certainly can advise on any repercussions for skipping, or postponing, the dose. And will know which physicians, nationwide, are using it and can direct you to the closest physician. They can also liaison with the doctor so your not being a current patient of her or him isn't a roadblock.

There are osteoporosis injectables and IV infusions that are critically sensitive to even postponing dosing so it's a good idea to check that out. I know of one case where someone 'postponed' a Prolia injection for two weeks, not knowing how serious that could be, and experienced the Prolia 'takeback'...losing a lot of bone in that short period of time without having any idea that that was a predictable consequence. These drugs don't all act the same so it's important to get correct information so you can protect what you've gained so far.

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callalloo | @callalloo | Apr 21, 2022
In reply to @dolan "I guess I haven't heard of this new medication. At 37 I fractured my T9 raising..." + (show)
@dolan

I guess I haven't heard of this new medication. At 37 I fractured my T9 raising my arms over my head and from there eveything snowballed. Had my first DEXA scan which showed extreme minus numbers for hips and spine. Continued to fracture bones with normal movement. Pre-menopausal. Started on Fosamax daily(I think. It was so long ago). Worked some but wouldn't sustain. On to Forteo. LOVED the bone growth with this. I gave myself injection daily for 2 years. That is the limit on Forteo. At the same time I was doctoring at Mayo with these bone issues, spots on body, elevated WBC...(diagnosed in 2005 with Systemic Mastocytosis which I gave myself 3 shots a week of Interferon for 3 years) I then went on to Fosamax to sustain the new bone from Forteo. That did well. My doc decided that since I had started so early in my years that I should have a drug 'holiday'. It was almost 4 years when I fell on ice and fractured my pelvis in 5 spots. THE WORSE EVER. 1 week hospital, 3 weeks transitional care. Home to a 4 level home with a walker and crutches. On to Prolia and my endocrinologist says will be my go to for 'ever'. I am now almost 66. I continue to have DEXA scan every 3 years, And Prolia every 6 months. Had 2 minor stress fractures in my ankles last summer. Wore a gel brace on one and that got better and a boot on the other. Stepping off curbs, dip in the yard, ice(live in North Dakota)....frighten me daily.

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All the drugs for osteoporosis have issues, some worse than others. Prolia has only been on the market for a tad over ten years, thus no long-term safety or results record. And 117, 000 adverse effects listed on the Federally-funded FAERS adverse effects website.

For what it's worth, and understanding that doctors' opinions can legitimately vary widely, my endocrinologist thinks Prolia is OK for short-term use if other options are less good, but not long-term use. It might be the right option for you but it could pay to know exactly why it's the best option versus all other choices. And the basis for your doctor selecting it.

Most old-line osteoporosis drugs were assumed to be given to far older women and with a then-shorter actuarially-predicted lifespan. There's not great data on the effects of these drugs over decades. So we're in a whole new situation and hopefully more new, 'intelligent' drugs will come along to help keep bones healthy and self-renewing and osteoporosis a thing of the past.

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callalloo | @callalloo | Apr 21, 2022
In reply to @whitebunny "My endocrinologist has been giving me Evenity injections to treat osteoporosis. I received 8 injections (two..." + (show)
@whitebunny

My endocrinologist has been giving me Evenity injections to treat osteoporosis. I received 8 injections (two shots, once a month). I have experienced a lot of side effects:
loss of concentration, couldn't use my logic or problem solving, memory loss, extreme fatigue, hair loss, weak vision, tingling in hands, needle tingles in feet, bone pain (of course, I kind of expected that), sores on my scalp, leg, buttocks, nails dry and splitting). I am a cancer patient since 2012, received 1 year of chemo after ovarian surgery. I still have cancer it is in remission. The chemo caused hair loss as well as memory loss. I could not remember people's names or correctly use math, or remember numbers. After taking the Evenity for 8 months, I decided to stop. It was just like being on the chemo again. I have now been off Evenity for two and half months and am feeling much better. hair loss has slowed down, and the sores are clearing up. My logic skills are coming back, and memory is better but i don't feel sharp. I have a appointment with a "new" endocrinologist tomorrow... we'll see what happens next. I too feel like I am between a rock and a hard place. I could not do the full 12 months of Evenity. My bones have become very thin -4 even though I eat healthy foods and take the calcium and D3 .... nothing is working. also, i was supposed to do more excersize and weight lifting, but just like the chemo, the evenity made me so weak and fatigued all I wanted to do was go lay down and sleep. since i have been off of it , i definitly have more energy. i will let you know how it goes.

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How was the visit with the new endocrinologist? Was it helpful and did s/he had some good ideas for treating the osteoporosis but have fewer, gentler side effects? It's hard dealing with anything as serious as cancer of any kind, even in remission, so I hope you were reassured about the bone challenge with some different options.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 22, 2022
In reply to @mjdnanny "I have received Evenity for 10 months but now we are living almost 4 hours from..." + (show)
@mjdnanny

I have received Evenity for 10 months but now we are living almost 4 hours from home for the next few months and my doctor has tried to refer me to someone locally to complete the 12 month course but not able to find anyone. So I would like to know the difference in effectiveness for 10 months of treatment versus the full 12 months. If necessary I could drive home for the shots. I can't find any information to help me with my decision.

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Good evening and welcome to Connect. Thank you for presenting this very good issue. I have to tell you right away that I don't have an answer for you. Evenity is the newest osteoporosis treatment that both builds bone and protects it from reabsorption. So if you don't complete the 12 months of Evenity does that mean that not all of the bone development will happen? And then.......how can you prevent the reabsorption if you are not continuing for the entire course?

I have read that Evenity may be able to have a longer delivery time.....perhaps 18 months or more. However, your best bet is to call the manufacturer, Amgen, and talk with one of their medical specialists. Amgen also produces Prolia which is a reabsorption protector.

Here is the phone number: 800 772-6436. When answered I think you press "2" for patient assistance with an RN or other medical professional.

Afterward, would you please compose a post that can help other patients with similar concerns? I, personally, would also like to know what you learned and what you decided to do about completing the Evenity treatment.

May you be free, safe, and protected from inner and outer harm.
Chris

REPLY
dolan | @dolan | Apr 22, 2022
In reply to @callalloo "Did the medical community have any idea why you such loss of bone that early in..." + (show)
@callalloo

Did the medical community have any idea why you such loss of bone that early in life? I'm reading a lot about bone health and it seems as if medical science is still learning a lot about the whole renewal cycle for healthy bones

Hopefully girls today will have better osteoporosis prevention drug choices as all of the current ones have some issues. I wish we could make young girls, many of whom are starving to achieve the bodies of 'influencers' whose bodies are more likely the result of cosmetic surgery, really care about the consequences of eating disorders while they are in their prime bone-growth years but I digress.

Jump to this post

I had been on Depo-Provera for a number of years and it had been studied that there could be bone loss with the use. I could have been a lucky one that it did but all the years since no one has dwelt on that piece. The fact that I had fainting spells from late teens until now...and the diagnosis of systemic mastocytosis in 2005 seem to be the connection. Having a bone marrow biopsy and finding mast cells in the marrow could weaken the bones. I always had enough dairy and weight bearing exercises.

REPLY
1 reply
callalloo | @callalloo | Apr 22, 2022
In reply to @dolan "I had been on Depo-Provera for a number of years and it had been studied that..." + (show)
@dolan

I had been on Depo-Provera for a number of years and it had been studied that there could be bone loss with the use. I could have been a lucky one that it did but all the years since no one has dwelt on that piece. The fact that I had fainting spells from late teens until now...and the diagnosis of systemic mastocytosis in 2005 seem to be the connection. Having a bone marrow biopsy and finding mast cells in the marrow could weaken the bones. I always had enough dairy and weight bearing exercises.

Jump to this post

Ah, a friend had early bone loss and had taken Depo-Provera and her doctor pondered that it might be a cause-and-effect thing but I don't think they pursued the idea. The body is so complicated and so much is still unknown.

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fredfred123 | @fredfred123 | Apr 23, 2022

Anyone here know of any Males taking Evenity ? I am a Male and need info about billing.
Thanks

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2022
In reply to @fredfred123 "Anyone here know of any Males taking Evenity ? I am a Male and need info..." + (show)
@fredfred123

Anyone here know of any Males taking Evenity ? I am a Male and need info about billing.
Thanks

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Fred, can you tell me more about your questions regarding Evenity and billing?

REPLY
fredfred123 | @fredfred123 | Apr 23, 2022

Was approved for Evenity by my insurance co., had a few months of injections, suddenly the infusion center cut me off several months ago saying that it's not approved by fda for a male and they can't get paid from my insurance co. My insurance company tried to contact them to tell them that they will pay but they are missing information on their billing. They will not return the calls from my insurance co. nor will they return my calls to them. My specialist got me approved for a full year of it and now I have lost several months of this treatment that I desperately need.
My specialist's office says they can't get involved because they just send the script to the infusion center and can't do anything about this. I'm stuck.

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