Evenity is suggested by my Encrinologist, but not sure what to do

Posted by dswags @dswags, Jun 7 4:34pm

My Dr wants to start me on Evenity. My scores are Spine -2.4, Femoral neck -2.6, Total hip -1.6, But then I also was told I -2.9, not sure how these scores work. My health issues before even starting is I already have Gerd, off/on pain in my middle back, sciatic nerve issue, Arthritis (hands, back). Never had a fracture or broken bones. I take Alendonate now for about 2 years and took it about 10 years ago for a 5 year period. I'm told the inside of my bones are strong but the outside is deteroriating. Reading reviews, I really wonder why I should do this when I'm not feeling bad, feel aches/pains but nothing major. Almost feel like this could be like a cancer treatment. Very concerned!

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Profile picture for bonita55 @bonita55

I would appreciate hearing from those of you taking the Evenity injection if you have experienced sudden weight gain. I’m approaching my 4th injection and have gained at least 5-7 lbs.!

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@bonita55 I gained five pounds during the first four months. It stabilized at that point then started coming off near the end of treatment. I am now 2 months post-treatment and the weight all came off.

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Profile picture for dswags @dswags

My age is 70, also I did try Prolia but only 1 shot b/c my jaw was cracking, thank you for articles

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@dswags just wondering if you could clarify...was your jaw bone itself cracking or was it making a cracking sound??

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Are you seeing an osteoporosis expert (endocrinologist). With your T scores and no fractures, I am not sure why they are saying Evenity now. However, you may be similar to me such that you are reaching a max of how long you can be on a bisphosphonate. I was on about 7 years, did a 2 year holiday, went back on 2 years and now in a 2 year holiday with Evenity next. This assumes I continue not to have fractures and my DEXA is more or less stable. Bisphosphonates stay in yiur bones up to many years. That's why drug holidays are possible (but ONLY with bisphosphonates). Long-term use of bisphosphonates is not advisable even with drug holidays from what I understand. It is known that prior bisphosphonate use will blunt the effectiveness of Evenity. It will stay produce gains usually, just less. Thus the reason I am doing a 2 year holiday first. It is not known if a 2 year bisphosphonate holiday will be enough to stop the blunting but my endocrinologist "hopes" so. Planning the drug journey until end of life is critical. So I still need to know what's next and have that plan. First I will need to lock in the gains of Evenity with Bisphosphonates (oral Prolia, Prolia cannot be stopped without using bisphosphonates after or risk spontaneous fractures). I hope this information helps as to why I am doing Evenity as part of my plan. You should ask such questions of your doctor such as whether it is reasonable to do a drug holiday from bisphosphonates before Evenity and/or why Evenity is being recommended right away is no fractures (thankfully) and goven your T scores. There may be other reasons why right now like your FRAX fracture risk score. Also ask what next after Evenity. Need to have a plan. Also ask if you can have bl99d marker tests now such as CTX to see if the bisphosphonates you are on are working. And during a drug holiday is you start one and before and after Evenity (add P1NP blood marker then as well). Good luck. Please share any update.

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Are you seeing an osteoporosis expert (endocrinologist). With your T scores and no fractures, I am not sure why they are saying Evenity now. However, you may be similar to me such that you are reaching a max of how long you can be on a bisphosphonate. I was on about 7 years, did a 2 year holiday, went back on 2 years and now in a 2 year holiday with Evenity next. This assumes I continue not to have fractures and my DEXA is more or less stable. Bisphosphonates stay in your bones up to many years. That's why drug holidays are possible (but ONLY with bisphosphonates). Long-term use of bisphosphonates (beyond 10 years I think?) is not advisable even with drug holidays from what I understand. I'll need to take longer thoygh. It is known that prior bisphosphonate use will blunt the effectiveness of Evenity. It will still produce gains usually, just less. Thus the reason I am doing a 2 year holiday first. It is not known if a 2 year bisphosphonate holiday will be enough to stop the blunting but my endocrinologist "hopes" so. Planning the drug journey until end of life is critical. So I still need to know what's next and have a plan. First I will need to lock in the gains of Evenity with Bisphosphonates (or Prolia, but Prolia cannot be stopped without using bisphosphonates after or risk spontaneous fractures). I hope this information helps as to why I am doing Evenity as part of my plan. You should ask such questions of your doctor such as whether it is reasonable to do a drug holiday from bisphosphonates before Evenity and/or why Evenity is being recommended right away is no fractures (thankfully) and given your T scores. There may be other reasons why right now like your FRAX fracture risk score. Also ask what next after Evenity. Need to have a plan. Also ask if you can have blood marker tests now such as CTX to see if the bisphosphonates you are on are working. And during a drug holiday if you start one and before and after Evenity (add P1NP blood marker then as well). Good luck. Please share any update.

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Thank you for your detailed info. This is my 2nd time for fosamax, on my 3rd year and about 10 years ago I did the fosamax (1st time). No fractures in my spine. I appreciate your detailed info. I will have more questions and I have a lot to learn and ask.

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Profile picture for strongbonez @strongbonez

@dswags just wondering if you could clarify...was your jaw bone itself cracking or was it making a cracking sound??

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@strongbonez
I do believe it was crackling noise. Any experience with prolia to share, would appreciate any feedback.
Thanks

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Profile picture for dswags @dswags

@strongbonez
I do believe it was crackling noise. Any experience with prolia to share, would appreciate any feedback.
Thanks

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@dswags thank you for your reply. I am getting ready to start Prolia. Waiting for ok from insurance and then blood work prior to starting. I'm also looking for any and all feedback on Prolia as I'm very nervous. (Truthfully I only want to read positive results but not seeing as many as I'd like). Tryed Fosamax but stopped due to GI issues. That was 8 months ago. BMD is getting worse so Dr recommending Prolia and then Reclast as follow up, once Prolia is stopped. Worst reading is -3.3 at left femoral neck. I'm 67 and know I shouldn't put it off any more so going to give it a try.

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Prayers thru this tough time. prolia with me showed up as cracking noise in my jaw, that’s when I changed to specialist. Maybe it would had been ok? My aunt has done Prolia and her scores improved and no side effects.

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A new article on Evenity. I think it makes it a more appealing option if it's not contraindicated for some reason.
https://www.medscape.com/viewarticle/postmenopausal-osteoporosis-shorter-romosozumab-course-works-2026a1000kmf

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Profile picture for babs10 @babs10

A new article on Evenity. I think it makes it a more appealing option if it's not contraindicated for some reason.
https://www.medscape.com/viewarticle/postmenopausal-osteoporosis-shorter-romosozumab-course-works-2026a1000kmf

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@babs10 thank you, quite interesting and something seriously to consider

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