What should I know before starting Evenity?

Posted by bevlevvancouverbc @bevlevvancouverbc, Sep 4 6:24pm

Sept 4th, 2024
EVENITY
Like many of you, I have started from shock, to fearfulness to being
apprehensive what medication to take for severe osteo.
My numbers are L -5.2 hips -3.6 and -4.0
I hoped to be able to improve the numbers with diet and exercise.
Eventually I realized that it might be possible with osteopenia
but probably not with severe osteoporosis. Dr Beck
Onero program is not available in Vancouver, yet.
I am trying to learn hip hinge and squats
eventually I will find a a physical therapist/kinesiologist
with osteoporosis experience.
I do the stairs as often as I can, increasing how many times:
until hopefully add ankle weights.
My threadmill speed is 2.2mph..the goal is to increase every few weeks:
method: increase, count 24 seconds - go back to starting baseline – several times:
the goal is 2.5mph which is maintenance: and the larger goal is 3.1mph
which is osteogenic.
Diet: aside from the calcium and and Vit D: am looking into natural
sources of Vit K (Natto is not something I could consume regularly).
and have 5-6 prunes daily.
So…have finally made the decision to go with Evenity, if approved.
Have not used anything in the past: anabolic or anti resorptive.
Thank you for ladies from Canada for mentioning CTX. It is available
in Vancouver (sorry I didn’t mark down names) P1NP and TBS is not available.
Neither is REMS. I got a CTX – which we pay out of pocket here, so is
Vit D out of pocket unless it’s requested by a specialist. And TBS is
not available either. My CTX was in the 500.
Would be glad to hear comments, or shared stories.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

@sunny65 are you the one who wrote me about fractures? I started to respond and then lost it....

After fractures the muscles are dealing with a shorter spine and I think of them as confused! After the fracture stabilizes, a lot of the pain is from muscles. I have baclofen and clonazepam but use them sparingly. I did PT massage- I was lucky to find a good one. Tai chi helps.

Evenity side effects for me were neurological (sensations). Dr. McCormick told me that 40% of his patients on Evenity have joint pain. You can read about the role of sclerostin (which Evenity inhibits) in joints and throughout the body. But people seem to have a lot of improvement on it.

Ask your doctor (or read "Great Bones' by McCormick and watch Dr. Ben Leder's You tube video "Combining and Sequential Approaches to Osteoporosis" about whether the 4 months you have done means the anabolic bone growing phase is over. There is a study using Reclast after 6 months of Evenity vs 12 months of Evenity because after 6 months Evenity, like Reclast, is anti-resorptive. So maybe it is okay to stop at 6 months! I hope your doctor can answer that.

@missy61 People don't seem to do Tymlos after Evenity that much but you could ask. Some do Prolia (preferably 1-3 shots) and then Reclast. Maybe you will do well enough on Evenity that you can just go on the "Lock in" with Reclast.

My fractures are T4, T6, T11, T12 (from a traumatic fall 2006), then L1, L2, L4 (from an unwise movement). Not fun.

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Dear @windyshores , thank you for replying. The first 2 shots of Evenity were ok. My back pain never left me, but was somewhat manageable with Tramadol. However, after 3rd shot my back pain was so bad that I ended in emergency room . After 4th - last week my lower back pain increased dramatically again. I talk with endocrinologist and she wants me to keep pushing through because she seen improvement in CTX test.
Also she told me that she don’t mind to switch me to Tymlos. I am so confused because I don’t know if on Tymlos I still have this severe back pain. You’ve mentioned that your back pain improved after 3 months. My question is : did you feel pain lessened when you started Tymlos? Or just in general after 3 months. My back pain is so severe for 6 months now and doesn’t stop even at night . I still make myself go for a short walks and trying not to give up. I never been in more pain in my life. My pain doctor offered to try to do nerve ablation. So, I agreed because I don’t know what else to do. My doctor increased dose of Tramadol and even this don’t give me much relief.Should I still try to stay on Evenity for another 2 months or try to switch to Tymlos at least for one year. My DXA test showed severe osteoporosis That was a year ago. I am going for another one shortly and see if I have any improvement after 4 shots of Evenity. Thank you for any advice.

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@sunny65

Dear @windyshores , thank you for replying. The first 2 shots of Evenity were ok. My back pain never left me, but was somewhat manageable with Tramadol. However, after 3rd shot my back pain was so bad that I ended in emergency room . After 4th - last week my lower back pain increased dramatically again. I talk with endocrinologist and she wants me to keep pushing through because she seen improvement in CTX test.
Also she told me that she don’t mind to switch me to Tymlos. I am so confused because I don’t know if on Tymlos I still have this severe back pain. You’ve mentioned that your back pain improved after 3 months. My question is : did you feel pain lessened when you started Tymlos? Or just in general after 3 months. My back pain is so severe for 6 months now and doesn’t stop even at night . I still make myself go for a short walks and trying not to give up. I never been in more pain in my life. My pain doctor offered to try to do nerve ablation. So, I agreed because I don’t know what else to do. My doctor increased dose of Tramadol and even this don’t give me much relief.Should I still try to stay on Evenity for another 2 months or try to switch to Tymlos at least for one year. My DXA test showed severe osteoporosis That was a year ago. I am going for another one shortly and see if I have any improvement after 4 shots of Evenity. Thank you for any advice.

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Evenity is more anti-resorptive in the second half. I don't know the effectiveness of Tymlos after 4 months of Reclast but I was told Tymlos is especially good for healing fractures so if you can switch, and if your doctor says it will be effective, I would consider it. My fracture pain lessened more on Tymlos than any other medication.

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@windyshores

Evenity is more anti-resorptive in the second half. I don't know the effectiveness of Tymlos after 4 months of Reclast but I was told Tymlos is especially good for healing fractures so if you can switch, and if your doctor says it will be effective, I would consider it. My fracture pain lessened more on Tymlos than any other medication.

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Thank you so much for your advice. I appreciate it very much.

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@normahorn

If I am reading the list right, instead of the co-pay being 20%, it will be 19.67% and the co-pay for Prolia will go down to 18.49%.

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Yes, it's not a lot. A little more helpful for Prolia.

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@maieva

I am 66 years old and have been on Reclast for two years with some improvement in my scores, although the second year my spine score went down. My endocrinologist at Mayo Clinic discussed Evenity and Tymlos and I think I am going to try Evenity since it is one year and convenient to go once a month to the clinic to get the injections. I had concerns about the black box warnings regarding heart attack and stroke, but she reassured me that she has not heard of anyone experiencing this. I also have an appointment with my cardiologist to see what he says before I start. I don’t know what else to do and yes, I’m very nervous about taking this drug, but I know it’s supposed to give me big gains in my spine where I need it the most. Any additional advice?

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Don't know how much help it is but can share with you my experience. I'm 64 and yesterday had my last of 12 of the double shots of Evenity and so I don't know yet how much of a difference it will have made. I had similar worries (and now concerns about what will be next.) But what I do know is:

I had no side effects. I had them scheduled within a 29 to 32 day window and luckily that didn't clash with anything. I was in and out in 15 minutes and the nurses told me that people do really well with it. I learned a few things: who does it makes a difference. One nurse there on certain days would somehow manage the syringe or angle or whatever it was in my arm or belly (I could choose) and would leave a small mark for a day or two, no discomfort though. The other nothing... no bleeding, just this cold feeling when the stuff goes in... and walked out to the car feeling fine!

So at least if you do decide to go with it I'd think that along with the incidents of serious issues being so small... and how much is just the pharmaceutical covering itself against battles over heart issues that might have happened anyway... there are lots of people like me that had no issues. A site like this naturally would have lots of people that had issues writing but there are many like me who got on the site to get feedback on timing questions and such. (And it's great to have a community like this.)

Hope it's reassuring.

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@spiderplant

Don't know how much help it is but can share with you my experience. I'm 64 and yesterday had my last of 12 of the double shots of Evenity and so I don't know yet how much of a difference it will have made. I had similar worries (and now concerns about what will be next.) But what I do know is:

I had no side effects. I had them scheduled within a 29 to 32 day window and luckily that didn't clash with anything. I was in and out in 15 minutes and the nurses told me that people do really well with it. I learned a few things: who does it makes a difference. One nurse there on certain days would somehow manage the syringe or angle or whatever it was in my arm or belly (I could choose) and would leave a small mark for a day or two, no discomfort though. The other nothing... no bleeding, just this cold feeling when the stuff goes in... and walked out to the car feeling fine!

So at least if you do decide to go with it I'd think that along with the incidents of serious issues being so small... and how much is just the pharmaceutical covering itself against battles over heart issues that might have happened anyway... there are lots of people like me that had no issues. A site like this naturally would have lots of people that had issues writing but there are many like me who got on the site to get feedback on timing questions and such. (And it's great to have a community like this.)

Hope it's reassuring.

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Thank you letting me know your experience. I was hoping that the second year of Reclast would raise my spine score of 3.5 up further, but my score is now 4.0. I am hoping that Evenity can give me some reassurance that I won’t start fracturing in my spine. There are so many scary stories out there. I was going to a Physical therapist and she said that I wasn’t going to fracture that easily. This is the piece of information that I keep hearing conflicting information. My endocrinologist told me to not bend over a lot and don’t lift anything heavy. Do you realize how much we bend a day? Lots! I do squat and don’t bend from the waist, so my therapist did teach me this. I am encouraged to begin Evenity. I feel I have no choice at this point. Please let me know if Evenity helped with your scores.

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@maieva

I am 66 years old and have been on Reclast for two years with some improvement in my scores, although the second year my spine score went down. My endocrinologist at Mayo Clinic discussed Evenity and Tymlos and I think I am going to try Evenity since it is one year and convenient to go once a month to the clinic to get the injections. I had concerns about the black box warnings regarding heart attack and stroke, but she reassured me that she has not heard of anyone experiencing this. I also have an appointment with my cardiologist to see what he says before I start. I don’t know what else to do and yes, I’m very nervous about taking this drug, but I know it’s supposed to give me big gains in my spine where I need it the most. Any additional advice?

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I worried about the black box warning too and saw my cardiologist before I started. I have completed 12 months and gained 16 3/4% with biggest gain in my spine. I know take alendronate once a week, pill. I had no side effects with Evenity.

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@maieva

I am 66 years old and have been on Reclast for two years with some improvement in my scores, although the second year my spine score went down. My endocrinologist at Mayo Clinic discussed Evenity and Tymlos and I think I am going to try Evenity since it is one year and convenient to go once a month to the clinic to get the injections. I had concerns about the black box warnings regarding heart attack and stroke, but she reassured me that she has not heard of anyone experiencing this. I also have an appointment with my cardiologist to see what he says before I start. I don’t know what else to do and yes, I’m very nervous about taking this drug, but I know it’s supposed to give me big gains in my spine where I need it the most. Any additional advice?

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@maieva I chose Evenity and it worked great for me. Great increase in bone density and no side effects worth even mentioning. I had fears about it and I looked at the studies or at least discussions of the studies and what the top osteo docs were saying. My conclusion was that Evenity has the least frequent substantial side effects of any of the osteo meds. That's just my personal sifting thru the available info including a lot of scanning of what people are reporting on forums and groups.
As to the CVD fears, well that is perhaps a legitimate fear and most top docs just say if you've had recent heart issues they don't recommend it. They don't seem to worry about heart issues beyond that.

My summary is that Evenity is clearly the most powerful med we have available for increasing bone density and reducing fractures. And it has in general for most people less side effects. The main argument against it is the lingering doubts about CVD safety and the general worry that it hasn't been around long enough to know for sure about it's safety.
I just spent a few minutes trying to check into how long it's been around. I found that it was approved in 2019 (that's 5 years ago now), the major trials were completed several years before that I believe, and I found research articles going back to 2011. Evenity was called AMG 785 in 2011. That's just a quick check but it does give some reassurance that it's not just been thrown onto the market. Yes they could still find some new bad side effects but it's been studied for many years now so if there are bad side effects still to be found they must not be happening to very many people.

My simple take - Evenity is the best we got and it's working well for most people.

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