1. < Osteoporosis & Bone Health

My results after 1 year of Evenity

Posted by hikernurse @hikernurse, Oct 22, 2023

I finished 12 months of Evenity in early October 2023 with thankfully zero significant side effects (a little tiredness, headache for a day or so) I am 67. My story is posted on my home page. I did maintain a good diet, exercised, walked, hopped, stomped, yoga, aqua dance, heel drops, stood on one foot whenever I could, ate prunes daily (5), eat my own L reuteri yogurt that I ferment, took algaecal plus (which only has trace strontium, not to be confused with strontium boost which I DID NOT take care for 2 grandchildren ages 2 and 4 twice a week. My point is I am pretty active. I had 4 previous separate fractures, 2 rib from hiking/biking falls and 2 wrists one from a fall off a few steps and another just weeks after my August 2022 DXA before I started meds. I was hiking in MT (mid September 2022) and turned to check on hubby and in an instant my foot hit a rock and I went down hard onto a rock. I shattered that wrist but had surgery and it healed. Started Evenity November 2022 (after covid) and after much research and medical opinions. Every morning I read the osteoporosis blogs from Mayo and have learned so much. Dr McCormicks Great Bones book is getting dog-eared.
I’m listening to Doug Lucas you tubes. We are all different but we are all trying so hard to help ourselves and really would rather not do meds but sometimes we just have to.

My bones did what Evenity said they would do. Spine went from -3.1 to -2.6 a 13.8% increase, femoral neck went from -3.3 to -3.0 a 7.5% improvement and total femur -3.0 to -2.7 a 5.4% improvement. Appointments and bloodwork in the next few days/week to see what’s next. I think I know the answer and I’m struggling. I believe it will be Prolia and I’m PANICKED about that. Concerned about time interval before starting. I will be having a CTX, not sure if that will help. I still have severe osteoporosis but the most important thing is I haven’t had a fracture!!

Any suggestions thoughts much appreciated. And I would be remiss if I didn’t throw out a thank you to @windyshores, @kristie2 and the moderators of this blog.

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

Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 22 10:32pm
In reply to @rn40 "I took 12 months of Evenity. Toward the end of the treatment I developed PVCs (heart..." + (show)
@rn40

I took 12 months of Evenity. Toward the end of the treatment I developed PVCs (heart palpitations), which stopped about 3-4 weeks after my last treatment. When I started exploring the options for "what's next", I read much about Prolia and recast. Both of those options sounded terrible to me, and I opted not to continue with any medication. When I asked my Dr. about going to alendronate instead of Prolia or Recast, her response was "that is not the protocol". I didn't feel like I had great response from the Evenity in my hips, which is where I really needed it, and decided I would continue surveillance with a DEXA scan each year, and make future decisions based on the results going forward.

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Good evening @m40. I have been focusing on the response you received that alendronate is not the "protocol". Sure wish your doctor had explained exactly what she meant. All I can offer is that my endocrinologist at Mayo recommended alendronate after two years of Tymlos, which is also a bone builder. I am now at about 16 months without any side effects or unsuspected reactions. I will see how everything has held up after DEXA scans in August.

I interpreted your statement to imply that your surveillance does not include medication. Did I read your post correctly?

May you be safe, protected, and free from inner and outer harm.
Chris

REPLY
kristie2 | @kristie2 | Mar 23 10:03am
In reply to @dexa "Hi Everyone, I'm 57 and just had a bone density scan with scary results. Many areas..." + (show)
@dexa

Hi Everyone, I'm 57 and just had a bone density scan with scary results. Many areas of my body are -4.0. I've always had a small frame and am pretty active. Unfotunately, I've never been good at taking vitamins or vitamin D, even when my doctor urged me to take them. My doctor has prescribed Evenity, so I'm very happy to have found this site. I'm scared of the possible life threatening side effects, but realize I need a skeleton. I'm just starting to research bone density and it seems there's a lot to learn. Wishing everyone the best on our shared journey. 🙂

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Please read Great Bones by McCormick . It’s a must read .
My t score is -4.6 so don’t feel bad.
I have been on Evenity for 8 months now and doing fine .
Wish you the best of luck.

REPLY
awfultruth | @awfultruth | Mar 23 12:08pm
In reply to @rn40 "I took 12 months of Evenity. Toward the end of the treatment I developed PVCs (heart..." + (show)
@rn40

I took 12 months of Evenity. Toward the end of the treatment I developed PVCs (heart palpitations), which stopped about 3-4 weeks after my last treatment. When I started exploring the options for "what's next", I read much about Prolia and recast. Both of those options sounded terrible to me, and I opted not to continue with any medication. When I asked my Dr. about going to alendronate instead of Prolia or Recast, her response was "that is not the protocol". I didn't feel like I had great response from the Evenity in my hips, which is where I really needed it, and decided I would continue surveillance with a DEXA scan each year, and make future decisions based on the results going forward.

Jump to this post

Hi @rn40. You do not state whether you had gains from Evenity or not. If you had gains the basic idea is that you have to take an anti-resorptive med to keep those gains. Evenity is not known to cause a terrible rebound effect like Prolia but you do still lose your gains in bone density without a follow up. It's unclear to me how long that takes but I'm guessing it starts pretty soon after you stop and continues until all those gains are gone.

There was a major study showing that Evenity followed by Fosamax helped prevent fractures. It is a standard protocol.
Perhaps your doc mixed up what you need as a follow up to Prolia? Fosamax is not thought to be strong enough to be a good option to follow Prolia. Reclast is thought to be strong enough for that situation. But for follow up to Evenity, Fosamax should be fine.
I don't recall seeing anywhere that Fosamax could not be used as an Evenity follow up.

REPLY
1 reply
hikernurse | @hikernurse | Mar 23 12:29pm

agree with @awfultruth i am the original poster of this thread (it does get confusing to follow sometimes). After Evenity I saw 2 docs, both endocrinologists One was more of an integrative endo and the other more traditional endo. At the time I was so stressed they would want me in Prolia but interestingly enough they both went right to alendronate (no mention of Prolia) and both though i would continue to get gains. Will know in October 2024. I am having no issues with the alendronate and continue all the other non medical modalities like supplements, diet, weight training ( which I’ve ramped up) walking, yoga, heel drops. Always looking for something else. It was also discussed after alendronate if i was losing to have more evenity. What I don’t know is how long on the Evenity. The range was 2-5 years and i’m certainly hoping for the low end of that range.

REPLY
lauratys | @lauratys | Mar 24 11:40am
In reply to @awfultruth "Hi @rn40. You do not state whether you had gains from Evenity or not. If you..." + (show)
@awfultruth

Hi @rn40. You do not state whether you had gains from Evenity or not. If you had gains the basic idea is that you have to take an anti-resorptive med to keep those gains. Evenity is not known to cause a terrible rebound effect like Prolia but you do still lose your gains in bone density without a follow up. It's unclear to me how long that takes but I'm guessing it starts pretty soon after you stop and continues until all those gains are gone.

There was a major study showing that Evenity followed by Fosamax helped prevent fractures. It is a standard protocol.
Perhaps your doc mixed up what you need as a follow up to Prolia? Fosamax is not thought to be strong enough to be a good option to follow Prolia. Reclast is thought to be strong enough for that situation. But for follow up to Evenity, Fosamax should be fine.
I don't recall seeing anywhere that Fosamax could not be used as an Evenity follow up.

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Fosomax or Actonel may be used after Evenity per my physician.

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1 reply
sandrac | @sandrac | Mar 25 10:59am

Prolia worked very well for me and I had no issues for a number of years after which I took a drug holiday as recommended by my doc. I am newly on Evenity and will go back on Prolia for a year after I finish my year of Evenity to help maintain the new bone I will have gained. Best of luck to you.

REPLY
sandrac | @sandrac | Mar 25 11:00am
In reply to @lauratys "Fosomax or Actonel may be used after Evenity per my physician." + (show)
@lauratys

Fosomax or Actonel may be used after Evenity per my physician.

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Prolia and Reclast can also be used following Evenity.

REPLY
marytlemons | @marytlemons | Apr 8 8:44am

I have had lots of fatigue and some depression since going on Evenity. (I also reduced my thyroid medication which had been prescribed to me years ago for depression, but I have been on the reduced dose for quite a while now, so should not be the cause of my depression. I never had thyroid issues, it was only prescribed for the depression.) The fatigue makes it harder to exercise. I will probably be starting something new for the depression, but would love anybody’s input about having any mood or fatigue issues since starting Evenity. I sleep 10 hours and still have trouble waking up in the morning though once I’m up I’m OK. Thank you everyone for your generous postings!
Mary

REPLY
1 reply
jennifer28 | @jennifer28 | Apr 9 8:31am
In reply to @marytlemons "I have had lots of fatigue and some depression since going on Evenity. (I also reduced..." + (show)
@marytlemons

I have had lots of fatigue and some depression since going on Evenity. (I also reduced my thyroid medication which had been prescribed to me years ago for depression, but I have been on the reduced dose for quite a while now, so should not be the cause of my depression. I never had thyroid issues, it was only prescribed for the depression.) The fatigue makes it harder to exercise. I will probably be starting something new for the depression, but would love anybody’s input about having any mood or fatigue issues since starting Evenity. I sleep 10 hours and still have trouble waking up in the morning though once I’m up I’m OK. Thank you everyone for your generous postings!
Mary

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Sorry to hear about your struggles with fatigue. Whilst I cannot speak to Evenity I am rather concerned about your thyroid medications, and am wondering why if you've had no issue with your thyroid you were prescribed hormonal supplement. Have you had your thyroid levels checked recently? I have hypothyroidism (for decades), by the time it was diagnosed I was suffering with severe fatigue along with other other symptoms. Please be sure to have detailed blood work which may help establish the cause of your fatigue.

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