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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Profile picture for ausiemaggs73
ausiemaggs73 | @ausiemaggs73 | Jan 7 7:27pm
In reply to @leslieb52 "@susanjane77 thanks for sharing. I need to hear more about people with no reaction. Can you..." + (show)
Profile picture for leslieb52 @leslieb52

@susanjane77 thanks for sharing. I need to hear more about people with no reaction.
Can you share any questions I should ask before my appt tomorrow?

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@leslieb52 Only problem I ever had with Prolia after 3 years (I think up to my 6th shot next) is I have developed a non itchy blotchy rash. I'm not 100% sure if it's from the prolia and am going to see a dermatologist next week to see if she can tell what it's from. Otherwise I'm fine and no real problems but my dexa score wasn't much better. I was told by doc that it may not get better but it wouldn't get any worse. I've never had a fracture and i don't want to as I had a very bad dexa score (-3.4) and -3.9 hip. I'm otherwise pretty fit and workout regularly with weights and cardio etc at 73 so I'm hoping it may improve a bit more next dexa as I'm trying to lift heavier but I can't see myself ever getting off the Prolia or anything else due to such a bad score!

REPLY
1 reply
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leslieb52 | @leslieb52 | Jan 7 7:52pm
In reply to @susanjane77 "Hi, Once you start Prolia, you will always be on it (unless for some reason that..." + (show)
Profile picture for susanjane77 @susanjane77

Hi,

Once you start Prolia, you will always be on it (unless for some reason
that it is not helping you) but you will not know till 2-3 DEXA scans.

I think you misunderstood, I was on Reclast before taking Prolia. I was
taken off Reclast because my DEXA scores did not improve.

Hope this helps!

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@susanjane77 thanks for the clarification.
I am 73, so I will be on it for many years. How often can we get dexascans?
Thanks for your quick replies.

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2 replies
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slr1 | @slr1 | Jan 7 8:08pm
In reply to @leslieb52 "@susanjane77 thanks for the clarification. I am 73, so I will be on it for many..." + (show)
Profile picture for leslieb52 @leslieb52

@susanjane77 thanks for the clarification.
I am 73, so I will be on it for many years. How often can we get dexascans?
Thanks for your quick replies.

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@leslieb52

This is @slr1 I am going to pay for a bone density dexa text after 1 year cause insurance only covers one test ever 2 years. If the dexa in 1 year shows my t-scores are worse I will get on Prolia.

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2 replies
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njhornung | @normahorn | Jan 7 8:15pm
In reply to @slr1 "@leslieb52 This is @slr1 I am going to pay for a bone density dexa text after..." + (show)
Profile picture for slr1 @slr1

@leslieb52

This is @slr1 I am going to pay for a bone density dexa text after 1 year cause insurance only covers one test ever 2 years. If the dexa in 1 year shows my t-scores are worse I will get on Prolia.

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@slr1
That may not be true that insurance only pays for 1 every 2 years. That may apply for screening DEXA's and not once one has been diagnosed as having osteoporosis. The wise move might be to check with your insurance company rather than making an assumption.

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2 replies
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leslieb52 | @leslieb52 | Jan 7 8:48pm
In reply to @slr1 "@leslieb52 This is @slr1 I am going to pay for a bone density dexa text after..." + (show)
Profile picture for slr1 @slr1

@leslieb52

This is @slr1 I am going to pay for a bone density dexa text after 1 year cause insurance only covers one test ever 2 years. If the dexa in 1 year shows my t-scores are worse I will get on Prolia.

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@slr1 please keep me posted.
How much does a test cost?

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slr1 | @slr1 | 6 days ago
In reply to @normahorn "@slr1 That may not be true that insurance only pays for 1 every 2 years. That..." + (show)
Profile picture for njhornung @normahorn

@slr1
That may not be true that insurance only pays for 1 every 2 years. That may apply for screening DEXA's and not once one has been diagnosed as having osteoporosis. The wise move might be to check with your insurance company rather than making an assumption.

Jump to this post

@normahorn

Good point! My pcp said she has one patient that got the yearly test paid for thru insurance. Maybe if pcp writes a script. Thank you Norma!

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leslieb52 | @leslieb52 | 6 days ago
In reply to @normahorn "@slr1 That may not be true that insurance only pays for 1 every 2 years. That..." + (show)
Profile picture for njhornung @normahorn

@slr1
That may not be true that insurance only pays for 1 every 2 years. That may apply for screening DEXA's and not once one has been diagnosed as having osteoporosis. The wise move might be to check with your insurance company rather than making an assumption.

Jump to this post

@normahorn I read somewhere that we can get dexa scans every year once diagnosed with OP. Just have to find the source.

REPLY
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leslieb52 | @leslieb52 | 6 days ago
In reply to @ausiemaggs73 "@leslieb52 Only problem I ever had with Prolia after 3 years (I think up to my..." + (show)
Profile picture for ausiemaggs73 @ausiemaggs73

@leslieb52 Only problem I ever had with Prolia after 3 years (I think up to my 6th shot next) is I have developed a non itchy blotchy rash. I'm not 100% sure if it's from the prolia and am going to see a dermatologist next week to see if she can tell what it's from. Otherwise I'm fine and no real problems but my dexa score wasn't much better. I was told by doc that it may not get better but it wouldn't get any worse. I've never had a fracture and i don't want to as I had a very bad dexa score (-3.4) and -3.9 hip. I'm otherwise pretty fit and workout regularly with weights and cardio etc at 73 so I'm hoping it may improve a bit more next dexa as I'm trying to lift heavier but I can't see myself ever getting off the Prolia or anything else due to such a bad score!

Jump to this post

@ausiemaggs73 keep me posted on what the dermatologist says.
You and I will be the Prolia twins.i am 73, and will likely be on Prolia for the rest of my life.

REPLY
2 replies
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njhornung | @normahorn | 6 days ago

My philosophy is that the answer is "No" if you do not ask. If you ask, the answer may be "Yes" amd asking costs nothing.

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slr1 | @slr1 | 6 days ago

@leslieb52 -

I will! I do not know thr costvfor a self pay dexa scan.

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