Evenity

[Wyaatch]

Hi, I started Evenity in June and I find myself having tight leg muscles making it harder to walk and move…my endocrinologist said “it’s possible”when I asked if my injections are causing it. She added that my spine needs this to avoid another fracture…but if it gets worse I could stop adding 6 months of building your bones is better than zero. ( but I thought later, I’ll lose the gain if I don’t get on something..reclast? Prolia? are the ones the doc mentions.I’m getting an MRI as a spine specialist thought it could be stenosis causing this. Anyone have anything similar? Are there better choices after Evenity? ( hope hope)

[MayGodBlessYou]

endocrinologist was recommending it to my Mother. said the anabolic action mostly stops at 9 months. said it is followed by prolia or intravenous alendronate, i think.

so at 6 months i reckon gains would be like two thirds there.

[MayGodBlessYou in reply to MayGodBlessYou]

so if the leg pain became too much, you've made gains, you have other options.

[Wyaatch in reply to MayGodBlessYou]

Thanks so much..I looked up the word you used..anabolic…it was associated with steroid use. Are there steroids in Evenity…or are you referring to the action of bone building in Evenity? The idea that I might have easier leg movement in 3 more months would be a such fortune…( I know everyone is different…but we can hope!) I heard prolia and reclast were options after Evenity…is there a way to check of fosamax or alendronate ( they are the same) can be used or is an option they gave your mother ? My doc listed only the two with some possible tough side effects reclast and prolia. ( Evenity is so new ..the news about it is harder to get) Thanks…I’m having anxiety …

[MayGodBlessYou in reply to Wyaatch]

i don't quite understand evenity, so couldn't accurately say what the anabolic component or mechanism is ... i haven't read much on it, tired of reading, and most of it's marketing, a one-year course to me sounds like it's (too) high powered,

my heart is breaking, can barely speak about my Mum's case,

options are few and unattractive. she hasn't used fosamax. sorry i somehow missed your reply.

[Wyaatch in reply to MayGodBlessYou]

Hi there..alendronate is one of the options they gave to your mom..that you reported above. it’s just another name for fosamax. Sorry for the stress you are having..I know it’s very hard to discuss these issues…and very tough to have these diseases too…The info should be coming from health care pros but instead patients are scrambling to get basic answers…very short staffed now here in America…I’m thinking Canada & European patients may have more access to answers…due to the fact that our system runs more on insurance decisions…not necessarily on health.

[Healthymb]

Hello I am getting ready to start Evinity and was hoping you could share your journey thus far with information on the drug. I am 63 my t score is low I’ve been Reclast for two years and it is not working so now they feel like my only alternative is this medication. I understand you have to get two shots. Do you always get them in your arms? Do you have any reactions after the shot? I see you’re having pain in the legs. I assume you did not have this before you began the drug. The concern for me is that I feel absolutely well I can walk everywhere. Nothing bothers me I have no pain. However, they claim this is my last recourse to ensure that my phones do not start fracturing. I would greatly appreciate any information or guidance you could provide me.

[Wyaatch in reply to Healthymb]

Hi, I think the best thing is to make sure what your dexa scores are…as some are being put on drugs when maybe other treatments could be used such as weight bearing exercise and Vit D with K2, calcium, magnesium. It sounds like your spine has no broken fractures? That’s good as they say one fracture means there will be more…hence the need for Evenity…the side effects must be weighed against the effects that come with a fracture or two or three…so I think we as patients have to study and read….but on Evenity I’m always probably too afraid of all drugs…but there have only been the usual few days of redness and a little itching at injection site and sometimes a light dull headache that goes away…so the leg tightness is unknown…hope to know more after the MRI. The main question for me is what’s the best med after Evenity… good luck and good studies..which is hard to do !

[josephinius1 in reply to Healthymb]

Different tack here...can I ask what your t-scores are? I was prescribed Evenity, but insurance denied it. I already have multiple fractures. I see endocrinologist again next week, imagine he'll suggest something else. I don't want Reclast, so am curious what kinds of scores didn't improve on it. (If I'm going to take a drug that only does one thing, I feel like a bone builder makes more sense, but I have a suspicion our insurance will deny everything unless there's some sort of scholarship program.) I AM in pain. I envy you! Stay well+

[Healthymb in reply to josephinius1]

Lumbar spine: (L1-L3)

BMD (in gm/cm2): 0.612

T-score: -4.6

Z-score: -2.8

Left Hip:

BMD (in gm/cm2): 0.717

T-score: -2.3

Z-score: -0.9

Left Femoral neck:

BMD (in gm/cm2): 0.782

T-score: -1.8

Z-score: -0.2

These were a bit higher on my previous scan. Got worse with doing annual Reclast infusion. So now trying evenity if it gets approved

[josephinius1 in reply to Healthymb]

I'm almost 63, too, and my spine t-score is also -4.6...how are your hip and femoral head so much better than your back? Is there a possibility your readings are off? I'm no expert but "people" have suggested when there's a big discrepancy, something might be off. My hip/femoral head were -3.3/-3.5...and relative to my spine, are non-issues. My spine seems to be literally caving under pressure. Not to say if you have a t-score less than -4, "you should be in pain,"...I have no idea. No one seems to know, maybe because it's different for everyone.

How did you discover you had osteoporosis? Not sure where you are, but I was told "We don't screen before 65." If my husband hadn't asked for a DEXA (and he did that only because his dad has suffered from the aftereffects of Prolia,) for himself after he fractured two vertebrae, I still wouldn't know, even though I've been addressing back pain now for four years. (Osteoporosis wasn't on my radar, for sure, and even though my husband has it (-2.9) in his spine, I still figured my issue was something else because I ran, lifted weights, was bigger boned/muscular and always slightly chubby. Surprise!)

At any rate, I don't think my scores are wrong, and my z-scores (as calculated by me,) are even worse (-5.6) maybe because I know I've had fractures.

Perhaps Reclast didn't improve your scores but did help prevent fractures?

Why do they want you on Evenity, if you haven't fractured?

I've heard/read it's one shot, and that people do better if they get it in their belly. (I joined the FB Evenity group in anticipation of starting it. That's definitely an option if you haven't been there already--lots of people sharing!)

(Just thinking out loud. 😅)

Thanks for responding!

[Wyaatch in reply to josephinius1]

Yes Evinity is one shot a month for a year…it’s to build bone back…but they need a follow up after the year to hold it..so I see only prolia or reclast for the follow up…unless someone knows more..

[josephinius1 in reply to Wyaatch]

That's what my endo said--one year of Evenity, then something like 2 years of reclast, then Prolia for...awhile. But even he seemed to think my chances of truly getting better were slim.

[Wyaatch in reply to josephinius1]

Drs are so different..I have a (understatement) pretty troubled spine up and down (doc thinks Evenity is the only thing that will help )

[Wyaatch in reply to josephinius1]

I gained 17% more bone in my hip and the dr said it’s good progress..the injections once a month were in your arms or belly wherever is wanted…I still have stiff muscles but I can’t track the cause…I chased stenosis being the problem but they didn’t know..come back in a year the back people said…so be iffy! I wish I could wait before starting on reclast …but I b guess the bone will lose what it gained…..

[josephinius1 in reply to Wyaatch]

That's outstanding! Thanks for updating! Sorry about the pain...I'm concluding that pain goes with the territory, but exercise does help ME. Yes, I know you have to take Reclast or something after Evenity. I guess whatever is causing you to lose bone is still in play. I'm still here without drugs, hoping that the nutrition changes, exercise, and supplements will at least somewhat address the causes for my bad bones, but, won't know until "time".

[Rik123]

I took Evenity for a year because I had 4 fractures in my spine. I also had muscle pain mostly in my back but here and there in my leg. The leg pain only lasted for seconds though. The back pain was relieved in short order by reclining or leaning on something. My t scores increased about 10 - 12%. I was delighted. I followed up with Prolia for a year. The increases continued in all areas except my spine which lost 12% in that year. My doctor said that was rare. Now I'm running around trying to get specialists to find an answer. Today I'm going for a REMS scan in the hopes that the dexa scan was inaccurate - wishful thinking maybe?. I'm still on Prolia.

[Wyaatch in reply to Rik123]

Good luck! I looked up REMS and on my list of meds…Evenity wasn’t listed but was a USA federal link. Are u in Canada? Please keep me informed through a message or group reply, as I see prolia ..something I’m afraid of as it’s usually the follow up med after Evenity, is on the list of REMS USA.i have 4 fractures too.

[Rik123]

Sponsoredevenity.com

evenity.com/

EVENITY® (romosozumab-aqqg) - An FDA-Approved Treatment.

This is the link to Evenity. I do live in the U.S.

As far as the REMS scan goes it is a bone scan with t-scores but the t scores measure bone fragility not density. But both scans can tell you how bad your osteoporosis is. It confirmed that my spine is in bad shape. I'll go back in a year to compare this one to next year's. I spoke with a nurse practioner who agreed that I should be on additional meds on top of Prolia. My femur numbers were not that bad but I expected that. Evenity and Prolia are made by the same company- Amgen. I know many women in the States on Prolia. I'm told by my doctor that those rare side effects are experienced by less than 1% of those taking the drug.

[Met00 in reply to Rik123]

REMS t-scores are the same as DEXA t-scores, as are the z-scores, but REMS also has a bone fragility score, which is an extra score not available with DEXA.

[Rik123 in reply to Met00]

That's what I thought but just had the scan yesterday with a nurse practioner who interpreted the results while I was there. There was a discrepancy in t scores i.e., a -3.2 on REMS compared to a - 4.0 on dexa. But the overall analysis was the same and end result of level of osteoporosis was the same. Maybe some places have different intpretations? I don't know but I'll definitely compare this year to next year's.

[Met00 in reply to Rik123]

You need to compare the bone mineral density (BMD) measurements to see whether they've been interpreted differently. It's possible to have errors in both DEXA and REMS, but they're less common with REMS.

[josephinius1 in reply to Rik123]

Just jumping in here...I recently had a REMS, but have no idea if the results were interpreted correctly, or...what. I do know there was an even bigger discrepancy between my DEXA and REMS. By REMS, I'm barely osteoporitic (which in some ways makes more sense to me--osteoporosis seemed so unlikely, at least if you compare me to the thin, small boned women who are most likely to be afflicted early.) But that there was still "something wrong" with my back, and that I've had fractures confirmed now makes osteoporosis seem the more likely answer. Still, I have been making a lot of interventions, and per the REMS folks, positioning errors related to curvature of the spine and such could skew results. I have learned I have excess curve in my lower back, and my hips are "torqued"...compensation, I think, for what I determined was "SI joint instability"...which, when that joint moves out of place, has resulted in far greater pain and disability than compression fractures of vertebrae, so...guarding against its moving by any means is an adaptation I can totally see my body making. And, for all I know, could put my lower back out of the line of fire for a scan. And, people with osteopenia do fracture, right? If they're hard enough on their bodies? Still...seems like wishful thinking.

But the truth COULD lie somewhere in the middle? I'm certainly okay with not having the bones of a 90 year old at 60.

[Watercolorlover]

I too started evenity shots in April of 2023. Before starting I was diagnosed with bursitis in both hips. I’m still being treated for bursitis but have developed pain in my leg muscles also, making it very difficult to walk. Trying to figure out if it is coming from the bursitis or from evenity. Trying to decide if I should go off shots to see if legs get better. Have tried everything from PT, to massage to acupuncture & not even aleve can touch the pain. Feeling hopeless to fix this issue. Wondering if you are still dealing with this issue? Anyone else dealing with this? Thanks for any replies.

[Wyaatch in reply to Watercolorlover]

Hi there, when i told my endocrinologist about my leg muscles m, she said you could try for 6 months and stop and at least you’d have done results..half is better than nothing…it was so hard to choose as she couldn’t say yes or no..just good be about the pain…I now think taking the 6 and leaving may have been better…as I used to walk around my house 15-20 times w/ a walker but not now…so it’s very hard to guess as I’m slightly shocked that these new meds have such little info ( unless it’s the doctor) but I now have to have dental work and I have so little tine to pull teeth and get a partial in and start a new med…prolia ( not a bisphosphonate)& reclast…a bisphosphonate ..thoughts anyone?

[Watercolorlover in reply to Wyaatch]

I hung in there & finished my year of shots in April. I have an appointment for my Dexa next month. Will try & write back when I get results. My leg pains are better but going in for knee surgery soon due to 2 tears, hoping not from the shots. Never had knee trouble before shots🤔🙏🏼we all need answers & prayers. Hang in there.

[Crawldad]

I finished evenity shots April 2024. Had leg tightness doc had me take calcium. The calcium worked. Had no problem with lower leg after taking calcium. I think leg problem started after third shot. Stopped after 12 month. Will soon be going on follow up shots. Unfortunately my results were not impressive. Hopefully yours will be excellent.