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!

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

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 Are you only doing 2 shots of Prolia?

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Profile picture for daisy17 @daisy17

@lisaberkowitz We have to be our own advocates.

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@daisy17 all of this scares me. I do not know what to do for me. The side effects are very frightening!

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Profile picture for candaceb @candaceb

@daisy17 all of this scares me. I do not know what to do for me. The side effects are very frightening!

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@candaceb Just curious what your DEXA scores are, and your age? I am 76 with my worst score in my spine at -4.1. Thanks.

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Profile picture for daisy17 @daisy17

@candaceb Just curious what your DEXA scores are, and your age? I am 76 with my worst score in my spine at -4.1. Thanks.

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@daisy17 I am 78 and do not know my scores, just that it say osteoporosis and I have a list of what I should consider to take. I did contact them to send my dexascan results. I do not like the side effects one bit!!

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Profile picture for candaceb @candaceb

@daisy17 I am 78 and do not know my scores, just that it say osteoporosis and I have a list of what I should consider to take. I did contact them to send my dexascan results. I do not like the side effects one bit!!

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@candaceb You should ask your Dr's office for your DEXA scores as that might impact your decision. You should have 3 scores: spine, hip and femoral neck of hip. The lowest DEXA score for osteoporosis is -2.5 or lower. The lower your DEXA, the worse your osteoporosis is.

My DEXA scores are -2.7 in my hips and femoral neck and -4.1 in my spine. So, interesting that my spine is so much worse than my hips.

If your DEXA scores are low, you might be more inclined to take time to think about and research bone drugs and focus on exercise and supplements to see if that helps maintain or improve your scores. Keep in mind that bones change very slowly so take the time you need to make a decision you are comfortable with.

Check out Brick House Bones on Facebook, by Dr Lisa Moore who is a P.T. specializing in osteoporosis. She has a lot of free exercises and helpful tips.

Also, there are studies on Vitamin K, which helps direct calcium to the bones. There is discussion about this in this support group under: Vitamin K: High Doses of MK-4 and MK-7 Show Promising Results"

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Profile picture for sassysaveur @sassysaveur

@deb0117 Are you only doing 2 shots of Prolia?

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@sassysaveur I think I'm going to be on it forever

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Profile picture for leslieb52 @leslieb52

@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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@leslieb52 seems like the longer the post the more complaints so I've learned to perhaps not read those. They're over the top dramatic in my opinion.

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Profile picture for deb0117 @deb0117

@leslieb52 seems like the longer the post the more complaints so I've learned to perhaps not read those. They're over the top dramatic in my opinion.

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@deb0117
My feelings exactly.

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Profile picture for deb0117 @deb0117

@sassysaveur I think I'm going to be on it forever

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@deb0117 How are you processing that? I heard that possibility and it disturbed me. I worry that they may stop me after being on it a long time. Did your doc tell you if there is a limit as to how many years you can take Prolia shots? What if as I age I can’t get to the location for my shot every 6 months? It seems like a daunting commitment. I am considering it and learning from others who are traveling a similar road.

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Profile picture for sassysaveur @sassysaveur

@deb0117 How are you processing that? I heard that possibility and it disturbed me. I worry that they may stop me after being on it a long time. Did your doc tell you if there is a limit as to how many years you can take Prolia shots? What if as I age I can’t get to the location for my shot every 6 months? It seems like a daunting commitment. I am considering it and learning from others who are traveling a similar road.

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@sassysaveur Actually you bring up a good point that I have thought about. I wondered if there was another covid- like period of time whether I could get the shot in the time frame of every 6 months. I suppose I would transition to a bisphosphonate at that point. From what I understand from my endocrinologist it's very important that you take something if you stop Prolia. I am now 75 and after my last fracture, I decided I had to take stronger meds. Surgery is not fun at this age. I will have another dexa in August and will report on this site my improvement. I definitely improved after the year on Evenity even to osteopenia in some areas. After 5 years on actonel I had reached a plateau and began to lose bone mass again.

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