Evenity—-Looking for user input (good or bad).

[Bones4Me]

Due to multiple vertebrae fractures and a low DEXA score (-3.1), I have been on Prolia shots every 6 months for almost 3 years. I have seen some improvement, but not much. As a result, my doctor would now like me to switch to Evenity. I just wondered if any of you have taken Evenity, and if so, please pass on your input (good or bad). Thank you in advance.

[BanjoGal]

I'm in the same situation (but a 70 year old woman) - multiple fractures and a low DEXA score. I was on Prolia shots (on for two years, hiatus, on for two years) and then relcast infusions. Unfortunately neither helped. Although Evenity carries more risk, we decided it was the best course. I've been on it for 6 mos. (out of the year regimen). Two shots (just because there is so much med) every month. You know Evenity targets the other kind of cells from Prolia. Prolia is supposed to prevent loss; Evenity is supposed to grow new bone. Anyway, no problems so far. We'll see in 6 mos. if there is improvement.

[Raleigh59 in reply to BanjoGal]

supposedly evenity is the best option. I myself am on Tymlos daily self injections.

[Bones4Me in reply to Raleigh59]

Best of luck with the Tymlos injections. There is definitely not one "cure all" for those of us with Osteoporosis. It is good we have this chat area to discuss with others.

[Bones4Me in reply to Raleigh59]

Thanks for your reply. I hadn't heard of your Tymlos injections before. I will keep that drug name in mine, in case Evenity doesn't work well for me.

[Raleigh59 in reply to Bones4Me]

I think evenity is more popular bc self injections is not for everyone and they can’t control compliance with it. It’s also more expensive . And the research shows better results with evenity . Tymlos is the modern forteo . I personally wanted a daily option bc of my extreme propensity to side effects . With daily you can just get out from under it faster

[Bones4Me in reply to Raleigh59]

What you described (and your reasoning) makes perfect sense in your case. I will keep your path in mind, should I have side effects with Evenity.

[Bones4Me in reply to BanjoGal]

Thank you for your input on your history and your now present use of Evenity. Very glad to hear that you haven't had any issues so far. Good luck going forward.

[Wyaatch in reply to BanjoGal]

Hi, do you know yet what you will use after the 12 months of Evenity? I’ve been on for 5 months…and just redness, a little itchiness for a few days after the shot. Now and then a little headache…but we need to get on something to hold the gain we hopefully get and all I know is they use either prolia or reclast…anyone know of any other options? ( scary things about both options)

[Wyaatch in reply to BanjoGal]

do you know what they will offer after the 12 months? I’ve only heard of prolia or reclast afterwards. ( so many bad comments about both!)

[BanjoGal in reply to Wyaatch]

I don't yet know. We'll do a density test, I assume and make some decisions. FYI-I've already had Reclast and Prolia in shot and infusion forms (no success). Prolia hits one kind of cells in your bones; evenity the other and supposedly helps grow bone.

[Wyaatch in reply to BanjoGal]

That will be interesting…maybe the reclast will work after your bone density exams show the improvement…I’m wondering if you will go back on one of them as maybe then it will work!

[BanjoGal in reply to Wyaatch]

Well, I'm no Pollyanna but we can't give up. Gotta keep trying & most important, keep moving. Even if it's slow movement.

[Songbird6]

Hello,

I am 62 and was prescribed Evenity (Romoszumab) in April this year, I have severe Osteoporosis, due to steroids for PMR and was not given bone protection meds as a back up alongside them.

I started the injections in May 2023, my experience so far has been positive and I took my fourth dose yesterday. I always find the injection sites painful after administering but that fades after a few days! Hopefully it is helping me and not causing other damage, ie heart/stroke related as possible side effects.

[Jemi7266 in reply to Songbird6]

Hi, glad you haven’t had any serious side effects with a Evenity.

I’m 67 and have been on Evenity since June 2023. After the injection, I get a headache for a few hours and my arms are sore for about 1 day.

Overall, my side effects are not bad & tolerable.

Best wishes

[Bones4Me in reply to Jemi7266]

Thanks Jemi7266 for your input on your experiences with Evenity.

I am finding that there is no "handbook" in dealing with Osteoporosis, and all doctors are not uniform in what they suggest & prescribe. This means we all have to do our "homework" in researching these medicines and make a rational decision on what we want inserted into our bodies.

Thanks again, Bones 4Me

[Wyaatch in reply to Songbird6]

Do you know what they will prescribe after the 12 months…I’m on it to with 6 months to go…

[Songbird6 in reply to Wyaatch]

Hi, I believe it will be an infusion of Zoledronate.

[Bones4Me]

Songbird6, Thank you for your input, regarding starting Evenity four months ago. Hopefully no side effects come your way, and that you see nothing but benefits from Evenity. Right now, due to recent new fractures, I am on target to start Evenity in December, after the six month shot of Prolia gets out of my system. Regards, Bones4Me

[Wyaatch in reply to Bones4Me]

Hi I started Evenity 5 months ago and wondered if your doc has said what you should go on after out 12 months of Evenity shots….we need something to protect the bone gain I guess. Wyaatch

[Jemi7266]

I too was on Prolia for about 5 yrs. Unfortunately my last DEXA & lags showed that my bone density was declining. My endocrinologist recommended Reclast, but I chose Evenity instead.

I started Evenity injections (2x month) four 1/2 months ago. So far the only side effect I have has is a headache that will last for several hours. However on my most recent Evenity injection I did not get a headache or any other side effect.

I won’t know if Evenity is working until my next labs & DEXA which is due in March 2024.

I hope this helps.

[Wyaatch in reply to Jemi7266]

I’d be interested to know what you might get on after the 12 months of Evenity…my doc said use either prolia or reclast to maintain the bone density gained by Evenity. I’ve heard BOTH have some side effects though…am wondering what are our options after Evenity?