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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@gravity3

What is his plan for drug sequencing after prolia?

Maybe check out Dr. Benjamin Leder's presentation on May 21 at 7
OsteoBoston.org

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I think I stay on Prolia but I haven’t gotten that far yet.

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I just had my 4th evenity treatment last week. The only side effect I’ve had so far is fatigue after 10-14 days from treatment which lasts about 3 or 4 days. So far no complaints

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@lauratys

This is good information for everyone. I wish I had stopped after 6 months. Up to that point had no adverse reactions. I did 11 months and am still struggling with some degree for arthralgia after stopping Feb 2023. I never had any arthritis pain prior to Evenity. I never knew about the 6 month benefit window.

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Hi @lauratys
I'm so sorry that the side effects lasted so long. Are they getting any better now?
I had my 5th set of injections last Tuesday. Over the following days I had periodic tingling in my ankles. All has been going well up to now with no remarkable side effects. Today I got sudden sharp pain in one ankle, and I can't walk on it. I took an NSAID but prefer to avoid doing that. I've also got an ice pack on it. Is there anything in particular that you've found that alleviates the pain?

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I took 3 months of Evenity shots for low bone density because I have not had any prior stroke or heart incidents. After 3 months I developed severe heart arrhythmias that were occurring several times a day. I went to see my cardiologist and it happened while I was on an EKG machine, so they recorded the whole thing. My heart went to 230 beats per minute for a minute and then dropped back down to 120, then went back to 230. I was oscillating like that for quite a few minutes as I sat on a chair, after getting off the EKG machine. I suspect that if I had any vascular blockages in my system, I would have had a stroke right then and there. I think the Evenity shots caused the arrhythmia episodes. I had to have an ablation heart surgery within 2 weeks. So in order to prevent a POSSIBLE bone issue later in life, I ended having cardiac surgery immediately. This is NOT a good tradeoff.

Since getting off the Evenity shots, all the arrhythmia episodes went away, thank goodness. I am back to diet and exercise. I now work out 7 days a week for about 45 minutes with both jogging and lifting weights to hopefully build bone. I am also told that new measurements such as trabecular scores are better measurements of bone quality than just bone density measurements. My trabecular scores are above average.

I am 67 years old and very active and healthy. I was diagnosed with osteoporosis quite a few years ago which was surprising to me. I suspect that being born in Asia, drinking milk was not the norm and also the local water was not floridated. I have not had a bone scan since the ablation surgery.

I don’t know if my reaction is just specific to me. It feels like the Evenity shots acted like stimulants to my system. I have never had any heart issues prior to taking Evenity and nobody in my immediate family has either.

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@hopefullibrarian

Hi @lauratys
I'm so sorry that the side effects lasted so long. Are they getting any better now?
I had my 5th set of injections last Tuesday. Over the following days I had periodic tingling in my ankles. All has been going well up to now with no remarkable side effects. Today I got sudden sharp pain in one ankle, and I can't walk on it. I took an NSAID but prefer to avoid doing that. I've also got an ice pack on it. Is there anything in particular that you've found that alleviates the pain?

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My pain was in joints and muscles and got better slowly about 3 mos post Evenity but never has totally gone away as Fosomax stirred it all up again. Switched to Actonel and that is manageable. I never had any aches or pains prior to these meds. The Actonel is okay but I think I am just sensitive to these drugs but want to try to keep Evenity gains, of course! Best to you and listen to your body as you know you best!!

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I just finished 12th injections of Evenity. It has been uneventful.
Before starting this treatment, I was terrified of Evenity.
I start Reclast this month, so I have shifted my focus of anxiety to that.
Everyone is different.

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@lauratys

Unfortunately yes and it started just about a week ago. I seem to be able to take Fosomax for 6-8 weeks then get pretty significant hip joint pain. I had that with Evenity at month 7 or 8. I don’t think my body likes antiresorptive drugs. I may try switching to daily Fosomax but waiting a couple of weeks to see if pain decreases throughout the week with 70 mg dosing. It’s just a challenge to feel like I have arthritis when I had zero aches/pains prior to Evenity and Fosomax .

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Where did you feel the arthritis pain? I started Evenity last June and by July I was having strange tingling and pain in my mid back. I do have stable compression fractures in my thoracic spine. I have had increasing pain and am even on a daily dose of Meloxicam to help (doesn't always give me much relief). I have one more shot in 2 weeks and hoping the pain and tingling subside. I was going to start Fosomax but your experience scares me. Not sure what to do at this point. I just hope I see some results in my Dexa scan. I have gone from being very active to doing a minimum of things. It's even getting hard to enjoy my grandchildren.

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I've had 5 injections of Evenity with no side effects. No pain during injection. Are there others out there with the same experience? I think we only hear from those having issues so it gives a slanted view and can scare/worry those thinking about going on it.
I am not minimizing the experience of those who are having side effects, just stating my experience.

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@susanfalcon52

I just finished 12th injections of Evenity. It has been uneventful.
Before starting this treatment, I was terrified of Evenity.
I start Reclast this month, so I have shifted my focus of anxiety to that.
Everyone is different.

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Sorry to hear this. I didn't have much luck either on Evenity. Had high hopes. Hope Reclast helps.

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I don’t know if evenity worked. Waiting for dexa report.

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