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Any success stories about Evenity to share with fearful me?

Posted by callmekate @callmekate, Aug 23 8:57pm

After acquiring 2 compression fractures, I am biting the bullet and going for my first Evenity shot in 2 days. I am afraid of everything from heart palpitations (I have AFIB) to muscle spasms and joint pain and everything else . Has anyone been ok on the shots? Or only had minor issues? I would love to read encouraging words. My REMS scores were ok: hip -1.0, spine -1.2, but my DEXA scores were much worse: hip -2.8, spine-4.8, so I feel I have little choice now. Many thanks.

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gobigs | @gobigs | Sep 23 5:09pm

Don’t be afraid, I am a 56 year old male, who has severe secondary osteoporosis of unknown origin. I was prescribed and approved for evenity and finished the 12 months. No side effects! I gained 16% of my BMD back. The unfortunate part is now I have to figure out what the next course of action is considering I still need to build bone.

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awfultruth | @awfultruth | Sep 24 8:37am
In reply to @vinelli "Had my endocrinologist been clearer about side effects it would have made other decisions along the..." + (show)
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Had my endocrinologist been clearer about side effects it would have made other decisions along the way easier to make. I feel like in my self advocacy process she learned more from me about the side effects than I did from her. If you have any knee joint issues prior to taking the Evenity, you can expect them to be worse for the first 6 months of the program. They ease up somewhat after that time. The majority of the bone growth occurs through month 6 as evidenced by the CQT results of L1-L2 performed prior to starting and at 3 and 6 months intervals based on my requests for the testing.
Her initial reassurances that none of her clients had reported side effects left me dubious but I did proceed with the program.
I would have been happier with a doc who relied less on drug company data from studies and more on surveys from actual clients. Perhaps I expect too much from today's physicians.

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@vinelli Are there any surveys of actual clients reporting on their experiences with osteoporosis meds?

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awfultruth | @awfultruth | Sep 24 8:49am
In reply to @shelldct1 "I thought I would lobby to get Evenity for myself instead of the Reclast my endocrinologist..." + (show)
Profile picture for shelldct1 @shelldct1

I thought I would lobby to get Evenity for myself instead of the Reclast my endocrinologist recommends. However, after you mentioned the knee issues, I might have to rethink about my position. I get joint pain (not enough to prevent me from golfing and walking a lot), but I wouldn’t want it to get any worse than now. This is the reason I love to read this blog; it is informative, and as you mentioned, it’s real life issues, not statistics based on a trial program.

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I don't know that there is any evidence that Reclast is safer than Evenity for one's knees or much of anything else. Maybe heart issues? If you thoroughly check out Reclast you will find that some people have severe life altering issues that do not go away. What's unknown is what percentage of those taking Reclast or Evenity have significant long lasting problems due to taking them. Myself I'm much more afraid of Reclast than Evenity. Of course I've already done a year of Evenity with great success and no side effects worth mentioning. After Evenity you still have to take something to hold onto the gains you get from Evenity. And many then take Reclast. If one follows that route they will have likely gained significant bone from Evenity and be much further ahead in the game than if they had just started with Reclast.

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shelldct1 | @shelldct1 | Sep 24 9:33am
In reply to @awfultruth "I don't know that there is any evidence that Reclast is safer than Evenity for one's..." + (show)
Profile picture for awfultruth @awfultruth

I don't know that there is any evidence that Reclast is safer than Evenity for one's knees or much of anything else. Maybe heart issues? If you thoroughly check out Reclast you will find that some people have severe life altering issues that do not go away. What's unknown is what percentage of those taking Reclast or Evenity have significant long lasting problems due to taking them. Myself I'm much more afraid of Reclast than Evenity. Of course I've already done a year of Evenity with great success and no side effects worth mentioning. After Evenity you still have to take something to hold onto the gains you get from Evenity. And many then take Reclast. If one follows that route they will have likely gained significant bone from Evenity and be much further ahead in the game than if they had just started with Reclast.

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Thank you for your insight. At this time I have decided NOT to start on meds due to so many side effects that are associated with them. I have several friends on various OP meds (fosamax, reclast, prolia) and every single one has had issues, the one on Prolia even fracturing!!
My endocrinologist has agreed to wait another year while I make changes to my lifestyle (vit D supplementation, increase calcium and protein intake, weight bearing and resistance exercises and so forth). I hope I will improve or at least stay steady with my tscores with my changes.
I think she agreed with my decision and didn’t push because my FRAX score is really good and I am in very good health (other than being diagnosed with OP).

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awfultruth | @awfultruth | Sep 24 10:53am
In reply to @shelldct1 "Thank you for your insight. At this time I have decided NOT to start on meds..." + (show)
Profile picture for shelldct1 @shelldct1

Thank you for your insight. At this time I have decided NOT to start on meds due to so many side effects that are associated with them. I have several friends on various OP meds (fosamax, reclast, prolia) and every single one has had issues, the one on Prolia even fracturing!!
My endocrinologist has agreed to wait another year while I make changes to my lifestyle (vit D supplementation, increase calcium and protein intake, weight bearing and resistance exercises and so forth). I hope I will improve or at least stay steady with my tscores with my changes.
I think she agreed with my decision and didn’t push because my FRAX score is really good and I am in very good health (other than being diagnosed with OP).

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That sounds reasonable to me. Your T-Scores are not terrible (not good but they could be so much worse). I reached a -4.0 in one vertebrae before I gave up on avoiding meds. That was probably too far to go but luckily I have not fractured and now my vertebrae are all better than -2.5. So hopefully I'm much much safer than before.
Oh, I see your CTX is rather high. That bears watching. For myself I consider above 250 for CTX as heading in the wrong direction. I think the CTX has to be considered along with other bone markers and DXAs and one's overall health so that there is not like an absolute scale that shows what is good or bad. That's one reason more docs don't use the markers. But from what I've read I think 300-400 is the start of an imbalance of too much bone cleanup. Above 400 like 600 plus it gets more and more likely you are losing too much bone. But I'm definitely no whiz on bone markers so do your own research on that.

BTW the changes you are making sound great. I would suggest adding Vitamin K2 MK4 if you are increasing Vitamin D. And yes MK4 not MK7 which more people recommend. Also Bioidentical Hormones are a good thing to consider if that hasn't already been mentioned in this discussion.
Best of luck to you (and to all of us dealing with this problem)

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shelldct1 | @shelldct1 | Sep 24 11:21am
In reply to @awfultruth "That sounds reasonable to me. Your T-Scores are not terrible (not good but they could be..." + (show)
Profile picture for awfultruth @awfultruth

That sounds reasonable to me. Your T-Scores are not terrible (not good but they could be so much worse). I reached a -4.0 in one vertebrae before I gave up on avoiding meds. That was probably too far to go but luckily I have not fractured and now my vertebrae are all better than -2.5. So hopefully I'm much much safer than before.
Oh, I see your CTX is rather high. That bears watching. For myself I consider above 250 for CTX as heading in the wrong direction. I think the CTX has to be considered along with other bone markers and DXAs and one's overall health so that there is not like an absolute scale that shows what is good or bad. That's one reason more docs don't use the markers. But from what I've read I think 300-400 is the start of an imbalance of too much bone cleanup. Above 400 like 600 plus it gets more and more likely you are losing too much bone. But I'm definitely no whiz on bone markers so do your own research on that.

BTW the changes you are making sound great. I would suggest adding Vitamin K2 MK4 if you are increasing Vitamin D. And yes MK4 not MK7 which more people recommend. Also Bioidentical Hormones are a good thing to consider if that hasn't already been mentioned in this discussion.
Best of luck to you (and to all of us dealing with this problem)

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Before you reached -4 in your tscore and started on meds, did you do any of the recommended strategies, like the LiftMoor/Onero which have been shown to increase BMD? Or do Dr Loren Fishman’s 12 yoga poses, also shown to increase BMD? I have started the yoga poses, and will start weight training next week.
Yes, the CTX score is concerning. I will do some research and see if there are ways to bring those down other than meds.
Addendum; after I posted the above, i went on YouTube and found this podcast from Dr Doug Lucas on how to reduce CTX level. I am incorporating some of them already (higher animal proteins, 5-6 prunes a day and working out). I guess I will find out in a year if any of these help OP.

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rjd | @rjd | Sep 25 8:03am
In reply to @awfultruth "That sounds reasonable to me. Your T-Scores are not terrible (not good but they could be..." + (show)
Profile picture for awfultruth @awfultruth

That sounds reasonable to me. Your T-Scores are not terrible (not good but they could be so much worse). I reached a -4.0 in one vertebrae before I gave up on avoiding meds. That was probably too far to go but luckily I have not fractured and now my vertebrae are all better than -2.5. So hopefully I'm much much safer than before.
Oh, I see your CTX is rather high. That bears watching. For myself I consider above 250 for CTX as heading in the wrong direction. I think the CTX has to be considered along with other bone markers and DXAs and one's overall health so that there is not like an absolute scale that shows what is good or bad. That's one reason more docs don't use the markers. But from what I've read I think 300-400 is the start of an imbalance of too much bone cleanup. Above 400 like 600 plus it gets more and more likely you are losing too much bone. But I'm definitely no whiz on bone markers so do your own research on that.

BTW the changes you are making sound great. I would suggest adding Vitamin K2 MK4 if you are increasing Vitamin D. And yes MK4 not MK7 which more people recommend. Also Bioidentical Hormones are a good thing to consider if that hasn't already been mentioned in this discussion.
Best of luck to you (and to all of us dealing with this problem)

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@awfultruth Could you please share links to a couple of the studies/discussions about bone markers that you found most helpful ? Thanx

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kay15 | @kay15 | Sep 25 7:46pm

Hiya! I am a 32 year old on month 4 of Evenity. i chose to get the shot in the abdomen because I have extra weight in that area (190lbs) , the first time they gave me 2 shots , one and then another. Do not recommend, ideal is to have them both at the same time (by 2 nurses). Very soar, could not bend down. I recommend drinking a lot of water and ibuprofen (check with your doctor). The medication needs to be out for 30min to make sure it goes in properly so if your ever going to be early call ahead (or late). My side effects currently are insomnia and extreme exhaustion. I do not recommend driving yourself if your getting the abdomen shot , I prefer to lean back during the drive. Also pick a day you have nothing going on the next day, mine are all on Friday at 4pm and I just veg out on the weekend. Ice packs, heat packs, snacks, melatonin would be what I recommend you keep in hand. Wishing you the best!

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nannygoat5 | @nannygoat5 | Sep 26 7:48am

My DIL is an endocrinologist and has seen no bad side effects. My own endo is a fan. You will see on this forem that many people who comment have negative effects- that is primarily because people with good results don’t usually go on sites like this.

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awfultruth | @awfultruth | Sep 26 9:03am
In reply to @rjd "@awfultruth Could you please share links to a couple of the studies/discussions about bone markers that..." + (show)
Profile picture for rjd @rjd

@awfultruth Could you please share links to a couple of the studies/discussions about bone markers that you found most helpful ? Thanx

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@rjd I'm not certain which were the most helpful but here are some I saved on my pc so I probably thought they were pretty good.

"Bone turnover is adequately suppressed in osteoporotic patients treated with bisphosphonates in daily practice" . The title says it all.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3146915/
A good primer on bone markers:
"Bone turnover markers"
https://www.racgp.org.au/getattachment/a700d896-e591-42aa-a4cb-5b4575e77b7d/Bone-turnover-markers.aspx
This one is more difficult to follow but maybe worthwhile. I see I went thru it highlighting and making comments.
"Systematic review of the use of bone turnover markers for monitoring the response to osteoporosis treatment: the secondary prevention of fractures, and primary prevention of fractures in high-risk groups."
https://www.ncbi.nlm.nih.gov/books/NBK261650/
This one is long and technical:
"Bone Turnover Markers: Basic Biology to Clinical
Applications"
https://academic.oup.com/edrv/article/44/3/417/6889555
This one has a useful chart showing degree of suppression of CTX with different meds. It is an old paper so not all meds are covered:
" Bone turnover markers: use in osteoporosis" By Kim Naylor and Richard Eastell
I think I had to use Sci Hub to get the full pdf on this one.

This one is a from a webinar by Richard Eastell and is much more recent than the previous one, it's from 2019.
"Bone Turnover Markers For Monitoring Treatment of Osteoporosis"
I think I downloaded the slides here. I also see other webinars on bone markers on this same web page that I haven't looked at. Whether or not the complete webinars are available on Youtube or elsewhere I'm not sure?
https://www.osteoporosis.foundation/educational-hub/material/webinars
Ok, I've got a lot more entries in my folder on bone markers but this is all I've got time for going thru.
Good luck and let us know what you find of interest.

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