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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@windyshores

@sunny65 LDN is low dose naltrexone, right?

I hope you have an MRI asap to see what is causing the pain so you can decide whether it is from Evenity. I am not really clear on what happened with the neurosurgeon- you probably are not a candidate for surgery due to bone density loss. I have found that once surgeons figure out we aren't going to have surgery, they are out of the room quickly! I have had a better experience with an orthopedist who does not do surgery.

I am sorry you did not do the MRI. It seems important so as to figure out what is causing the pain and whether Evenity is a factor or cause.

If it is, there shouldn't be a problem stopping early since the anabolic phase is probably over, but you would have to do some bisphosphonate treatment afterward. Discuss with your doctor.
Do you have an endocrinologist you trust?

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Get your MRI as soon as possible!
When I found out the Evenity had caused osteonecrosis on both my hips!

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@cuzco1968

Get your MRI as soon as possible!
When I found out the Evenity had caused osteonecrosis on both my hips!

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@cuzco1968 Both hips lost their blood supply? How did Evenity cause this? I have not seen this listed as a side effect but the drug was approved in 2019 and so is very new. Did a doctor tell you that Evenity caused this? What treatment are you having?

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@irisjolie Usually either Reclast or Fosamax (alendronate) is prescribed after Evenity by my doctor, and some prescribe Prolia which might be safe for 1-3 shots but the rebound after that is problematic and might even be problematic with fewer doses. My doc only does bisphosphonates after Evenity.

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@sunny65

Hi @windyshores . Just wanted to get back to you since a lot different things happened in the past three days. First my diagnosis changed again (!!!). I don’t have flat back but swayback. Which is bad too. My pain level increased. I did DEXA test after 5 months using Evenity. It’s actually worse. Spine -5.1. It was -4.8. Not sure what’s happening. The doctor telling me that my previous test was last year September but I didn’t started Evenity until July of this year.( I don’t know where I was when I started) I had to deal with serious family matters and didn’t have time to think about myself. Doctor insists to finish Evenity and then go on Tymlos.Between making a decision about quitting therapy which didn’t produce improvement and medication. I am not 100 percent convinced that Evenity giving me pain. I have fractures throughout 4 discs in my vertebrae. I don’t have any luxury to go and find totally new doctor and start it over. The pain prevents me from driving or doing much around the house. I still tried walking today with my husband and cried from pain. Tramadol gives me headaches. I try to take just 2 a day. This is obviously not enough. I am going to see new therapist next week.Not sure how much treatment he can give it to me because my osteoporosis is so severe. It’s hard to understand how my CTX went from 647 to 345 but density numbers going other way. I been taking calcium in a pill and mostly food. The 1 cup of Almond milk supposed to have 480 mg. I drink one and have one with my oatmeal and take 500 mg in a pill. Also been taking vitamin D 3000 mg. I am not sure what I am doing wrong. I don’t have a real doctor who understands and listens. I am in my mid sixties and my head is spinning from all this crazy things that happening to me.

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@sunny65 so sorry about your bad news. The only thing to consider is that a loss of -.3 is supposedly not statistically significant. I have a chart of my DEXA's and they do jump around. I was told a change of -.5 was significant. That said, what is definitely significant is that it did not improve!

So your doctor is thinking you might have been lower than -5.1 when you started in July since bone loss might have occurred after the September -4.8 DEXA? So you might have gained or held steady, after all?

I don't know if there are studies on Tymlos after Evenity but they have different mechanisms so maybe your doctor can explain if it is a good idea of not. My doctor said it might take a month or two for "mineralization" from Evenity to happen. I wonder if you could switch to Tymlos a month after the Evenity you took last? Evenity is mainly anti-resorptive at this point in your treatment.

I wish you could have a second opinion but understand how difficult it is. At -5.1 you really need help. Can you tell your doctor that you want to try Tymlos asap? To strengthen your argument you could do a phone consult with Keith McCormick (Osteonaturals) but there it takes awhile to get an appointment.

Ugh and hugs!

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@irisjolie

Please comment on this. Today was the last day for the Evenity injections in the upper arm. I was taking Evenity for a year of monthly injections at the hospital. My question is what comes now? Will the MD prescribe some kind of supplement? Did you receive good results on the supplement? What is the name of it?
Thank you

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Some people go on Reclast after Evenity. That’s what I did. There are other options.
I couldn’t take any of the oral meds due to gerd, so chose Reclast. It’s an annual or every year infusion.
I had it in June 2024. No problems.
By the way, I had good improvements in spine and hip with the Evenity.
Also, I had a pretty bad fall a couple of weeks ago. I’m black and blue from head to foot on left side. I have a shiner, elbow bruised, hip and knee bruised. But, no broken bones.

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Susan thank you for the info. Evenity was good for me too. Before taking Evenity they put me on injections of Prolia. Unfortunately bone started growing in my jaw so stopped that one. I saw an oral surgeon who took the bones out of the jaw and prescribed a prescription mouth wash and antibiotics. What a mess that whole was.
Sorry for your bad fall. I noted with myself to slow down . I fell twice while gardening tripped on tree roots and injured my back. After two years I still have pain but much better relief due to Evenity.
Have a good week end.

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@windyshores

@irisjolie Usually either Reclast or Fosamax (alendronate) is prescribed after Evenity by my doctor, and some prescribe Prolia which might be safe for 1-3 shots but the rebound after that is problematic and might even be problematic with fewer doses. My doc only does bisphosphonates after Evenity.

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Thank you WindyShores. Prolia not safe for me. I will note Reclast as a possible choice pending Doctor approval. Many years ago I was started on Fosamax but quickly stopped because it made me sick.

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@windyshores

@sunny65 so sorry about your bad news. The only thing to consider is that a loss of -.3 is supposedly not statistically significant. I have a chart of my DEXA's and they do jump around. I was told a change of -.5 was significant. That said, what is definitely significant is that it did not improve!

So your doctor is thinking you might have been lower than -5.1 when you started in July since bone loss might have occurred after the September -4.8 DEXA? So you might have gained or held steady, after all?

I don't know if there are studies on Tymlos after Evenity but they have different mechanisms so maybe your doctor can explain if it is a good idea of not. My doctor said it might take a month or two for "mineralization" from Evenity to happen. I wonder if you could switch to Tymlos a month after the Evenity you took last? Evenity is mainly anti-resorptive at this point in your treatment.

I wish you could have a second opinion but understand how difficult it is. At -5.1 you really need help. Can you tell your doctor that you want to try Tymlos asap? To strengthen your argument you could do a phone consult with Keith McCormick (Osteonaturals) but there it takes awhile to get an appointment.

Ugh and hugs!

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Hi @windyshores . Do you think I can go to different doctor and I can make a switch now- after 5 injections?. Because the sequence is Tymlos and then Evenity - not vice versa and she is telling me that I can go on Tymlos after. You been on different medication before Tymlos yes? I am not sure if I trust this doctor on this because she paid zero attention to my pain even she is a pain doctor as well. I am in a such a hard place and it happened so fast that I not even sure how to deal with my pain and all of this.

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@sunny65

Hi @windyshores . Do you think I can go to different doctor and I can make a switch now- after 5 injections?. Because the sequence is Tymlos and then Evenity - not vice versa and she is telling me that I can go on Tymlos after. You been on different medication before Tymlos yes? I am not sure if I trust this doctor on this because she paid zero attention to my pain even she is a pain doctor as well. I am in a such a hard place and it happened so fast that I not even sure how to deal with my pain and all of this.

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@sunny65 if she says you can do Tymlos after Evenity, then it seems like you could do it now. I would think that longer on the anti-resorptive part of Evenity might reduce effectiveness of Tymlos possibly but I have no idea and doubt there are studies yet. Again I have no idea!

If I were you I would switch to Tymlos then do 4-6 months more of Evenity (repeating the truly anabolic part) if you want (depending on side effect evaluation) then Reclast or Fosamax- if my doctor agreed. Do you have any other possibility for a second opinion?

Can you afford $350 with McCormick? Not sure he would advocate with your other providers but it might provide back up.

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@windyshores

@sunny65 if she says you can do Tymlos after Evenity, then it seems like you could do it now. I would think that longer on the anti-resorptive part of Evenity might reduce effectiveness of Tymlos possibly but I have no idea and doubt there are studies yet. Again I have no idea!

If I were you I would switch to Tymlos then do 4-6 months more of Evenity (repeating the truly anabolic part) if you want (depending on side effect evaluation) then Reclast or Fosamax- if my doctor agreed. Do you have any other possibility for a second opinion?

Can you afford $350 with McCormick? Not sure he would advocate with your other providers but it might provide back up.

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Yes. I can find $350 if this can halo me. They telling me that doctors know the best. Not sure if this applies to me . I been going to doctors for over 6 months and I getting worse. I think I might allergic to Evenity because my all neck has red patches and they come and go. Last time I just have a half dose and it is still the same. I was originally prescribed Tymlos but my first doctor didn’t submit needed paperwork to insurance for two months. That’s how I ended with different doctor and got Evenity. The biggest problem is that my fractured vertebrae ( even this is healed) doesn’t want to hold my 106 lb weight and it feels like my spine is braking in a half. My knees are numb and hurting so bad. How did this all happen is such a short 6 months? Do you know how to reach Dr. McCormick?

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