1. < Osteoporosis & Bone Health
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Fearing risks of Prolia

Posted by slr1 @slr1, Jan 6 8:55pm

I am going to my pcp tomorrow morning to discuss whether to start Prolia or Jubbonti after getting dexa scan results showing my osteoporosis has gotten worse. I took Ralaxifene for the last 2 years and it didn't help. I have researched these 2 drugs and have read a ton of bad side effects from patient reviews and I am really nervous to try! After taking Boniva just one time in the past, I felt like I was ran over by a truck for 3 days and I refused to ever take a biphosphate again. I am thinking about not starting a new drug and exercising more. Any input is much appreciated!

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debhatchell | @debhatchell | Jun 2 9:16am
In reply to @lisaberkowitz "@debhatchell Neurosurgeon suggested seeing a metabolic bone specialist, do I have an appt in mid July..." + (show)
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@debhatchell Neurosurgeon suggested seeing a metabolic bone specialist, do I have an appt in mid July at Mt. Sinai. Specaking to my endo today sbout what to do until my appt to lock in gains. Osteoporosis is complicated to navigate.

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@lisaberkowitz Thank you!! Love the idea of a metabolic bone specialist. I appreciate the tip.

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neesie0159 | @neesie0159 | Jun 2 12:04pm
In reply to @lisaberkowitz "Explore Evenity with your doctor. Insurance will only cover it if it's done at a hospital..." + (show)
Profile picture for lisaberkowitz @lisaberkowitz

Explore Evenity with your doctor. Insurance will only cover it if it's done at a hospital infusion center, not in a doctor's office. Found that out myself, since I was told my insurance wouldn't cover it.

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@lisaberkowitz My insurance covered Evenity done at my doctors office. This was 2023/2024.

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gravity3 | @gravity3 | Jun 2 1:04pm
In reply to @neesie0159 "@lisaberkowitz My insurance covered Evenity done at my doctors office. This was 2023/2024." + (show)
Profile picture for neesie0159 @neesie0159

@lisaberkowitz My insurance covered Evenity done at my doctors office. This was 2023/2024.

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@neesie0159

Mine was given in my doctor's office and was covered by original Medicare. I also have ubh supplemental F.

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deb0117 | @deb0117 | Jun 11 3:37pm
In reply to @leslieb52 "I share those fears, and am weighing if I am more afraid of fractures and ending..." + (show)
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I share those fears, and am weighing if I am more afraid of fractures and ending in a wheel chair, or of the side effects of Prolia.

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@leslieb52
I was on a Evenity for a year with absolutely no side effects.
I am now on Prolia and after two injections no side effects. One has to be careful when reading negative comments about any drug.

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deb0117 | @deb0117 | Jun 11 3:40pm

Please get under the care of an endocrinologist. Unfortunately with osteoporosis the worst thing to do is to do nothing. I took Evenity for the year course with no side effects. I am now on Prolia and have not had any side effects after two injections. I have had broken bones and at age 75 I don't want any more. A broken bone can really stop your life no matter what bone it is.

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leslieb52 | @leslieb52 | Jun 11 6:31pm
In reply to @deb0117 "@leslieb52 I was on a Evenity for a year with absolutely no side effects. I am..." + (show)
Profile picture for deb0117 @deb0117

@leslieb52
I was on a Evenity for a year with absolutely no side effects.
I am now on Prolia and after two injections no side effects. One has to be careful when reading negative comments about any drug.

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@deb0117
I agree. People only post about negatives. I am grateful there is a forum for this, but I got too caught up in the doom scrolling.

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gravity3 | @gravity3 | Jun 12 3:36am
In reply to @deb0117 "@leslieb52 I was on a Evenity for a year with absolutely no side effects. I am..." + (show)
Profile picture for deb0117 @deb0117

@leslieb52
I was on a Evenity for a year with absolutely no side effects.
I am now on Prolia and after two injections no side effects. One has to be careful when reading negative comments about any drug.

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@deb0117

Same here. I have had no noticeable side effects and I've taken alendronate, forteo, evenity and Prolia.

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pjbrill | @pjbrill | Jun 12 4:23pm
In reply to @leslieb52 "I share those fears, and am weighing if I am more afraid of fractures and ending..." + (show)
Profile picture for leslieb52 @leslieb52

I share those fears, and am weighing if I am more afraid of fractures and ending in a wheel chair, or of the side effects of Prolia.

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@leslieb52 Exactly where I am- researched something on Facebook called Thryve but doesn’t have research to back up its claims.

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pjbrill | @pjbrill | Jun 12 4:32pm

The endocrinologist went over the side effects and I already have experienced jaw numbing with Fosamax. So that is a concern for the risk of the jaw problems with Prolia. Then if it is a problem, I can’t go off of prolia or it will make the osteoporosis worse. Seems no win to me. I do exercise and light weights but my diet probably doesn’t have as much dairy as it should as I was lactose intolerant. My probiotics seem to have helped that. I take a Calcium Citrate and have seen ads for organic Calcium that is supposed to be better-anyone tried that? I take vitamin D but can’t take vitamin k as i am on a blood thinner.

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2 replies
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daisy17 | @daisy17 | Jun 13 11:26am
In reply to @pjbrill "The endocrinologist went over the side effects and I already have experienced jaw numbing with Fosamax...." + (show)
Profile picture for pjbrill @pjbrill

The endocrinologist went over the side effects and I already have experienced jaw numbing with Fosamax. So that is a concern for the risk of the jaw problems with Prolia. Then if it is a problem, I can’t go off of prolia or it will make the osteoporosis worse. Seems no win to me. I do exercise and light weights but my diet probably doesn’t have as much dairy as it should as I was lactose intolerant. My probiotics seem to have helped that. I take a Calcium Citrate and have seen ads for organic Calcium that is supposed to be better-anyone tried that? I take vitamin D but can’t take vitamin k as i am on a blood thinner.

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@pjbrill Check out Brick House Bones on Facebook, by Dr Lisa Moore a PT specializing in osteoporosis. She has lots of free exercise videos and helpful information.

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