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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@leslie2121

After 8 injections I decided ( at recommendation of my endocrinologist) to take a month or 2 off to see if the symptoms I was having resolve.
I developed a chronic cold with cough (had to use my inhaler) and itchy scalp w rash like bumps around my ears… very minor but noticeable to me.
So far, those are resolving interestingly. And thankfully!
So will probably stop Evenity and switch to something to keep the gains.
Thinking Reclast -
What has been everyone’s experiences ?

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Hello
I was wondering if you had stopped the Evenity and switched to Reclast? How did the transition go? Did you have any side effects?

My cough is still present, less intense and it is now 25 days since my last Evenity shots. I canceled #8 round for now until I complete the ENT consult. I had a repeat DEXA with no change to scores at the hip or head of femur (but no additional loss either). I have had some improvement in scores to my spine.
Any information on the switch to Reclast would be helpful.

Thanks so much

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@paala

Hello
I was wondering if you had stopped the Evenity and switched to Reclast? How did the transition go? Did you have any side effects?

My cough is still present, less intense and it is now 25 days since my last Evenity shots. I canceled #8 round for now until I complete the ENT consult. I had a repeat DEXA with no change to scores at the hip or head of femur (but no additional loss either). I have had some improvement in scores to my spine.
Any information on the switch to Reclast would be helpful.

Thanks so much

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I had a Reclast infusion about 7 or 8 weeks after the last Evenity.
I coincidentally got Covid a few days later! Other than fever and aches, and a swollen knee ( which went away after a few days) I’ve felt okay. Especially after a few weeks .

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I'm so sorry about the Covid. Strange timing.
Good to hear that the Reclast side effects were manageable and that now you're feeling better. Once my cough subsides, I hope to switch to Reclast as well.
I'll let you know what happens.
Best to you!!

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@paala

I'm so sorry about the Covid. Strange timing.
Good to hear that the Reclast side effects were manageable and that now you're feeling better. Once my cough subsides, I hope to switch to Reclast as well.
I'll let you know what happens.
Best to you!!

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And to you! This forum has been so helpful as the doctors don’t seem very aware of any reactions except the initial APR (acute phase reaction) listed by the manufacturer.
I am leery of another dose though- definitely want to wait 18-24 months. I will see what the scan shows then.

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@leslie2121

I stopped after 8 months then did Reclast 3 months ago. My repeat dexascan shows 40% improvement in my lumbar spine. Going from T score of 4.0 to 2.7 for total lumbar spine.
Hips improved almost as much but they are still barely osteopenia.
So very encouraging!!

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I'm happy to hear this. I stopped after 9 months but I won't know about my bone density until January 2024.

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@cle60

My Mom started Evenity shots November 2020. She is 84 and has "horrible" bones. Just prior to starting Evenity, she had numerous fractures. Although the side effects scare me, we felt we did not have a choice but to start her on the medication. She had Prolia shots for years, apparently it was not doing the trick. She's always drank lots of milk, takes calcium supplements, magnesium and D3. We knew we had to do something different or she would continue to have fractures. After 3 months it seems to be helping. She fell three weeks ago and did NOT fracture any bones. So far, she does not appear to have any major side effects. We pray that continues.

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How is she doing now?

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@leslie2121

And to you! This forum has been so helpful as the doctors don’t seem very aware of any reactions except the initial APR (acute phase reaction) listed by the manufacturer.
I am leery of another dose though- definitely want to wait 18-24 months. I will see what the scan shows then.

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I am very leery of starting on Evenity and asked the NP at the osteoporosis clinic if I could start with half dosage for each of the first two months to see how I tolerate it. She refused. Has anyone else tried the half dose route?

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@dmanduca

Was your rash filled with liquid? I got a bad rash on my forearm with Fosamax after 3 weeks so I switched to Evenity. I’d like to follow up Evenity with a short dose of Reclast but my endo is afraid I’m allergic to bisphosphonates.

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Good afternoon @dmanduca......I was looking for another diagnosis when I found your message to @kolika about an allergic reaction to bisphosphonates. So I wanted to share a bit of history with you. My PCP started me on Bonniva, also a bisphosphonate. My reaction was painful and immediate and the medication was eliminated. We replaced it with Tymlos and everything was fine for two years. To avoid another bisphosphonate reaction, my endocrinologist recommended Prolia as the only safe route with two injections a year. Within weeks, the pain in my jaw and my joints was back again.

At this point, I requested a consult at Mayo Clinic. After discussion and record review, my Mayo endocrinologist wanted me to start Alendronate. I was surprised because that medication is also a bisphosphonate. However, what he figured out and shared with me was that the twice-a-year major injections don't work for me. It is way too much medication rolling around in my body for six months. The Alendronate is available in weekly tablets. I take one every Monday morning......and then sit quietly for 30 minutes without any other food or medication. The result has been amazingly perfect. No side effects, no reactions and I have found a renewed appreciation for the thoroughness of a great clinician.
Just thought I would let you know. Is your prescribing clinician at Mayo Clinic?

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

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@artscaping

Good afternoon @dmanduca......I was looking for another diagnosis when I found your message to @kolika about an allergic reaction to bisphosphonates. So I wanted to share a bit of history with you. My PCP started me on Bonniva, also a bisphosphonate. My reaction was painful and immediate and the medication was eliminated. We replaced it with Tymlos and everything was fine for two years. To avoid another bisphosphonate reaction, my endocrinologist recommended Prolia as the only safe route with two injections a year. Within weeks, the pain in my jaw and my joints was back again.

At this point, I requested a consult at Mayo Clinic. After discussion and record review, my Mayo endocrinologist wanted me to start Alendronate. I was surprised because that medication is also a bisphosphonate. However, what he figured out and shared with me was that the twice-a-year major injections don't work for me. It is way too much medication rolling around in my body for six months. The Alendronate is available in weekly tablets. I take one every Monday morning......and then sit quietly for 30 minutes without any other food or medication. The result has been amazingly perfect. No side effects, no reactions and I have found a renewed appreciation for the thoroughness of a great clinician.
Just thought I would let you know. Is your prescribing clinician at Mayo Clinic?

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

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Hello Chris and @dmanduca. Thank you for this info about Prolia and Alendronate. Some time ago I took Actonel once per week and would not be afraid to take it again. I started Evenity February 1, 2023 and will have my fourth shot 4/26. So far, I have thankfully not had any issues to be concerned about. What I first thought was a rash turned out to be an irritation to my thin, dry skin, which resolved when I stopped using a loofah. The second time was from shaving. I apparently have very thin easily irritated skin, no doubt due to my advanced age (great!). In the last week I have started to have mild headaches and ice pick type pain above my right eye. Who knows what that is about, as it could be allergies to blooming plants or sinus issue.
Be well everyone and keep in touch. I'm grateful for all your comments and this blog. Kolika

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@artscaping

Good afternoon @dmanduca......I was looking for another diagnosis when I found your message to @kolika about an allergic reaction to bisphosphonates. So I wanted to share a bit of history with you. My PCP started me on Bonniva, also a bisphosphonate. My reaction was painful and immediate and the medication was eliminated. We replaced it with Tymlos and everything was fine for two years. To avoid another bisphosphonate reaction, my endocrinologist recommended Prolia as the only safe route with two injections a year. Within weeks, the pain in my jaw and my joints was back again.

At this point, I requested a consult at Mayo Clinic. After discussion and record review, my Mayo endocrinologist wanted me to start Alendronate. I was surprised because that medication is also a bisphosphonate. However, what he figured out and shared with me was that the twice-a-year major injections don't work for me. It is way too much medication rolling around in my body for six months. The Alendronate is available in weekly tablets. I take one every Monday morning......and then sit quietly for 30 minutes without any other food or medication. The result has been amazingly perfect. No side effects, no reactions and I have found a renewed appreciation for the thoroughness of a great clinician.
Just thought I would let you know. Is your prescribing clinician at Mayo Clinic?

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

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Chris how long did it take for the pain in your joints to alleviate after Prolia injection?

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