1. < Osteoporosis & Bone Health

Evenity….stopped after the first set of injections…

Posted by sedrake51 @sedrake51, Jan 22, 2023

Evenity was recommended by my family practice physician. I am now 71, relatively active, 5’9” BMI:19. My Ortho issues began about ten years ago when I had an horrific ATV accident. I had a T12 burst fracture and two pelvic fractures. I recovered well and then about five years ago, I had a femur fracture and forearm fracture from side-stepping. My physician wanted to place me on Fosamax. I declined based on all of my research which was incredibly negative. I decided to improve my bone issues through exercise and nutrition plus supplements. I seem to always be remiss in garnering enough protein. I significantly improved my T-scores for my Spine: -1.6 to-1.1 and the hip from -2.6 to -1.9. These were all that were measured. Then, I became remiss in adhering to my improved osteo plan for exercise and nutrition. Big mistake! My recent T-scores were spine: -1.2, hip -2.8, neck -2.2 and forearm -4.3. By the way, always use the same machine for your scans. After reviewing the new numbers, my physician recommended Evenity. Based on everything I have read, Evenity has the most success with spine and not the hip, etc. I decided to give Evenity a try. Big mistake! The hospital nurse could not have been more kind and gave me two injections into the abdomen. Lots of pain at the injection sites and minor swelling across my entire abdomen. Ugh! Barely slept. Horrible! I took Tylenol, iced the injection sites and massaged the areas which offered me some relief. I never have headaches and had a throbbing headache for three days. My shoulders ached on both sides and still do four days afterwards. Needless to say, I can assure you that I will never take another Evenity shot again! The risks significantly outweigh the benefits at least for me. I have read about positive results for several mostly with the spine improvement for which I know that they are grateful! I am beginning my previous regimen for exercise and nutrition and will keep you posted as I receive my next scan. Best to all!

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

rn40 | @rn40 | Jan 7 10:23am
In reply to @windyshores "I called Amgen and they can only say that the FDA approved dose, based on studies,..." + (show)
@windyshores

I called Amgen and they can only say that the FDA approved dose, based on studies, is approved. They refer me to my doc who refers me to Amgen!

I read that those of us who are small and low weight have greater "exposure" to Evenity (and other meds of course).

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I had the same experience. When I would ask my doctor questions she would refer me to Amgen, and then Amgen would refer me back to the doctor. I felt like I knew more about the Evenity than my doctor did. I am 4'10" and weigh 98 lbs. I'm 76 years old. I often wonder why more medications aren't weight based, as I find that
medications generally don't agree with me, and I believe that could be based on my size. I was not familiar with Tymlos. Sounds like it worked very well. My results with Evenity were minimal. For now I am not going to treat with meds, I'll just follow with DEXA scans.

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windyshores | @windyshores | Jan 7 10:54am

@susanfalcon52 none of my docs are interested in "Great Bones" and just ask me if McCormick is a doctor, meaning MD. McCormick told me I probably know more than my doc, which is an uncomfortable place to be. I had side effects actually listed on the Evvenity site and my doc said he had never encountered them. I referred him to the website, as diplomatically as I could.

I am fortunate in that my doc is flexible and individualizes things but with Evenity not sure he will. Doc offered to look into reduced dose but he won't find any info. I also wondered about injections in my thighs since my arms are so thin, and tummy injections seem to have affected a muscle.

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windyshores | @windyshores | Jan 7 3:42pm
In reply to @normahorn "See https://www.pi.amgen.com/-/media/Project/Amgen/Repository/pi-amgen-com/Evenity/evenity_pi_hcp_english.pdf where administration in the thigh is noted." + (show)

Thank you @normahorn! I should have worn my glasses when I looked at that insert 🙂

"Administer 210 mg subcutaneously once every month for 12 doses in the
abdomen, thigh, or upper arm. "(2.2)

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wilkenl | @wilkenl | Jan 7 3:54pm
In reply to @leeosteo "Thanks Helen. From my research & for those on Original Medicare (not Medicare Advantage): Fosamax (or..." + (show)
@leeosteo

Thanks Helen.

From my research & for those on Original Medicare (not Medicare Advantage):
Fosamax (or generic Alendronate) is covered by Part D drug plan
Forteo, Teriparatide, Tymlos, Prolia are covered by Part D
Evenity, Reclast are covered by Part B

For all meds, you need to verify cost with your insurance carrier. Your out-of-pocket costs can be very different from carrier to carrier.

Best place to start is Medicare.gov.

There are places to seek financial assistance:
LillyCares for Forteo
Radius Assist for Tymlos
RX Advocate for overall
GoodRx (mentioned above)
Also, some states offer plans for state residents e.g., ArrayRXcard.com for CT
Some of these plans do not cover government funded plans e.g., Medicare. Some of these plans have income limits. Unfortunately, you really need to do the research for your circumstances.

I hope this helps everyone.

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This is interesting, as my endo recently started pushing me to start Evenity for one year, then Reclast thereafter... and I just got Medicare Part B. I have been wondering why she suddenly got pushy about meds (she knows I'm medication averse); I thought it was because she's now in a practice with other endocrinologists, whereas before, she was in a practice with dermatologists who didn't have anything useful to share over the lunch table. I imagine that her new group are Evenity acolytes, and she drank the Kool-aid.

In two weeks, I'm getting a second opinion from a rheumatologist who started his own osteoporosis clinic years ago, and who is now a professor at a highly respected medical university. I'm excited to hear what he has to say. My spine is -3.4, which my endo says is "scary," but I'm a follower of McCormick's concept that "bone density by itself is not a reliable indicator for fracture risk." So far, so good, that has held up for me (knock on wood).

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1 reply
windyshores | @windyshores | Jan 7 4:39pm
In reply to @wilkenl "This is interesting, as my endo recently started pushing me to start Evenity for one year,..." + (show)
@wilkenl

This is interesting, as my endo recently started pushing me to start Evenity for one year, then Reclast thereafter... and I just got Medicare Part B. I have been wondering why she suddenly got pushy about meds (she knows I'm medication averse); I thought it was because she's now in a practice with other endocrinologists, whereas before, she was in a practice with dermatologists who didn't have anything useful to share over the lunch table. I imagine that her new group are Evenity acolytes, and she drank the Kool-aid.

In two weeks, I'm getting a second opinion from a rheumatologist who started his own osteoporosis clinic years ago, and who is now a professor at a highly respected medical university. I'm excited to hear what he has to say. My spine is -3.4, which my endo says is "scary," but I'm a follower of McCormick's concept that "bone density by itself is not a reliable indicator for fracture risk." So far, so good, that has held up for me (knock on wood).

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@wilkenl have you had a consultation with Dr. McCormick? I am only speculating but for a DEXA of -3.4 he might suggest Evenity, Tymlos or Forteo.

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doreenc | @doreenc | Apr 3 7:41am

Hi! I've been recently diagnosed with osteoporosis and my doctor strongly suggests Evenity. I'm far more interested in learning how you built your bone density through nutrition, exercise and supplements. I'm particularly interested in which supplements and the dosage you take. Also what exercises did you do other than sidestepping? Many thanks for your help. This all new to me. I'm in the early process of gathering information so I can make an informed decision.

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1 reply
windyshores | @windyshores | Apr 3 8:25am
In reply to @doreenc "Hi! I've been recently diagnosed with osteoporosis and my doctor strongly suggests Evenity. I'm far more..." + (show)
@doreenc

Hi! I've been recently diagnosed with osteoporosis and my doctor strongly suggests Evenity. I'm far more interested in learning how you built your bone density through nutrition, exercise and supplements. I'm particularly interested in which supplements and the dosage you take. Also what exercises did you do other than sidestepping? Many thanks for your help. This all new to me. I'm in the early process of gathering information so I can make an informed decision.

Jump to this post

@doreenc if your doctor wants Evenity, that may mean your DEXA and rate of bone loss is concerning. My view is that after menopause, bone loss seems inevitable, though it would be interesting to hear from anyone who has not had that experience. There are threads in this forum from people using natural approaches.

You might want to get a hold of a copy of Keith McCormick's book "Great Bones,' which covers both "whole body" approaches and medications. There are many videos on YouTube as well, and people here can make suggestions.

I tend to be pro-medication due to fractures, myself. Your options are Tymlos, Forteo or Evenity for initial bone building, followed by Reclast (or Prolia, but my docs don't use that). I chose Tymlos and am now doing Evenity.

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1 reply
birdie78 | @birdie78 | Apr 4 9:29am
In reply to @windyshores "@doreenc if your doctor wants Evenity, that may mean your DEXA and rate of bone loss..." + (show)
@windyshores

@doreenc if your doctor wants Evenity, that may mean your DEXA and rate of bone loss is concerning. My view is that after menopause, bone loss seems inevitable, though it would be interesting to hear from anyone who has not had that experience. There are threads in this forum from people using natural approaches.

You might want to get a hold of a copy of Keith McCormick's book "Great Bones,' which covers both "whole body" approaches and medications. There are many videos on YouTube as well, and people here can make suggestions.

I tend to be pro-medication due to fractures, myself. Your options are Tymlos, Forteo or Evenity for initial bone building, followed by Reclast (or Prolia, but my docs don't use that). I chose Tymlos and am now doing Evenity.

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I have one more month to go with Evenity and then I have to choose another drug to follow up. I was on and off of fosamax for many years and would prefer that to other choices following Evenity. Does anyone have experience with that course?

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1 reply
windyshores | @windyshores | Apr 4 9:34am
In reply to @birdie78 "I have one more month to go with Evenity and then I have to choose another..." + (show)
@birdie78

I have one more month to go with Evenity and then I have to choose another drug to follow up. I was on and off of fosamax for many years and would prefer that to other choices following Evenity. Does anyone have experience with that course?

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@birdie78 my doctors use Reclast but Fosamax can work too. Reclast is slightly more potent to "lock in gains." But if you have problems with it, it is great that you tolerated Fosamax.

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