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.

@hikernurse thank you so much for your post! ur results give many of us much needed hope! I think I could learn quite a bit from ur exercise regimen, especially adding some impact activity like stomping, hopping, heel dropping and jumping as tolerated. my understanding is those impact exercise help femoral/hip bones to get stronger. mine went opposite direction after 1 year on another anabolic forteo 🙁 . im up my exercise variety and nutrition for my second half of forteo treatment.

best luck to your next journey!

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@hikernurse

update to above post.

So it will be alendronate weekly with another DXA October 2024. And keep doing what I’ve been doing with regular exercise and calcium/Vitamin D supplements. I plan to add collagen and maybe osteo-stim a supplement I’ve looked at through Dr McCormacks website. I will have a repeat CTX in January to be sure it is coming down. Neither doc recommended or even mentioned prolia. I did ask why and they said too hard to get off and alendronate will do the job just as well. Apparently only a 1% difference in continued gains vs prolia. I did have severe osteoporosis in the low -3 s with some trauma induced fractures and it seems to be the right thing to start with an anabolic drug followed by alendronate for a few years and then a drug holiday. Best to all dealing with this disease. There is no quick fix and small gains or even staying the same are improvements. Important to keep strong with regular exercise as the supporting muscles, tendons and joints are also part of the picture, not just the DXA numbers!! Thanks again to all contributors to this site. Very valuable info for me.

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update to my journey:
To my surprise doing well on weekly alendronate meaning no GERD. CTX came down to 273 from 531 (when I finished Evenity). I never had a baseline before Evenity so I don’t know where I started . P1NP was 23 after being on Alendronate for 3.5 months (not sure what that means) I raised my vitamin D from 43 to 49. Continuing supplements with Dr McCormicks OsteoStim and just switched from Algaecal Plus (no strontium) to OsteoSustain (another supplement from Dr McCormick) Adding more strength/weight training to regime. I exercise at home using TeamBodyProject at video service that I’ve used for many years and like very much but not specific to osteo so being very careful. I did add some testosterone cream at a low level. (not sure how that works or if it does but one doc said might help some with bone building and energy levels???? Not sure about that but thought I’d give it a try til next DXA in October 2024. Could definitely use more energy with all the exercise which is so important. Also plan another round of BTMs in October. Docs say at least 2 years up to 5 on alendronate. Most concerned about increasing hip and considering a rebounder. Anyone have suggestions? Have been walking with a weighted vest but may have overdone that a bit (a little hip bursitis) so be careful. And
most important I feel well and no falls and no fractures and anxious to get back to more hiking which I kind of backed off a bit.

iI have learned so much from reading everyone’s stories that I wanted to post my updates. When I was first diagnosed i was so overwhelmed but now feel so much more in control and feel I have so many tools in my toolbox! Thank you to all who post and share!

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@hikernurse

update to my journey:
To my surprise doing well on weekly alendronate meaning no GERD. CTX came down to 273 from 531 (when I finished Evenity). I never had a baseline before Evenity so I don’t know where I started . P1NP was 23 after being on Alendronate for 3.5 months (not sure what that means) I raised my vitamin D from 43 to 49. Continuing supplements with Dr McCormicks OsteoStim and just switched from Algaecal Plus (no strontium) to OsteoSustain (another supplement from Dr McCormick) Adding more strength/weight training to regime. I exercise at home using TeamBodyProject at video service that I’ve used for many years and like very much but not specific to osteo so being very careful. I did add some testosterone cream at a low level. (not sure how that works or if it does but one doc said might help some with bone building and energy levels???? Not sure about that but thought I’d give it a try til next DXA in October 2024. Could definitely use more energy with all the exercise which is so important. Also plan another round of BTMs in October. Docs say at least 2 years up to 5 on alendronate. Most concerned about increasing hip and considering a rebounder. Anyone have suggestions? Have been walking with a weighted vest but may have overdone that a bit (a little hip bursitis) so be careful. And
most important I feel well and no falls and no fractures and anxious to get back to more hiking which I kind of backed off a bit.

iI have learned so much from reading everyone’s stories that I wanted to post my updates. When I was first diagnosed i was so overwhelmed but now feel so much more in control and feel I have so many tools in my toolbox! Thank you to all who post and share!

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Thank you and to everyone who shares their stories. Invaluable to say the least.

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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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@gravity3

I will be getting my third shots in November. Don't want prolia to lock in gains. I believe that someone had responded to me earlier and said that I could return to alendronate to lock in gains. I Hope that that is correct.

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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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@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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I did 11 months of Evenity and skipped last month as I had very bad joint and muscle pain that I have never had. But you do need to take a med after Evenity or you get what they call a ‘rebound’ effect and may be worse than when you started. I didn’t want to do Reclast as after several months of pain from Evenity I wanted no meds but didn’t want to lose gains. I also had very small gains in hips but significant gain in spine. I tried Fosomax as bisphosphonates are recommended following Evenity. Fosomax brought on pain again so now am taking once a month Actonel. It is better for me so far. I’ve been taking it for 6 months. I hope this helps you but do something as you don’t want to lose gains you have from Evenity.

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Is anyone having dental problems on Evenity or prolia?

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@classy999

Is anyone having dental problems on Evenity or prolia?

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I got osteonecrosis of the jaw from Evenity.
it resolved after 8 months with application of chlorhexadine to the involved area of the jaw.

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@ingridbergman

I got osteonecrosis of the jaw from Evenity.
it resolved after 8 months with application of chlorhexadine to the involved area of the jaw.

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I am so sorry to hear of your jaw issue but happy it resolved. Did you have any jaw issues before starting evenity.?
Did your dexa scores improve from the evenity?
Wishing you the best in your healing journey.

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@candy209

I am so sorry to hear of your jaw issue but happy it resolved. Did you have any jaw issues before starting evenity.?
Did your dexa scores improve from the evenity?
Wishing you the best in your healing journey.

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I never had any jaw issues before starting evenity. However I did have a dental extraction while on evenity.
I am sorry to report that my dexa scores did not improve after 12 months of evenity. Did anyone else have the same problem? Most people seem to have better dexa scores after evenity.

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