1. < Osteoporosis & Bone Health

Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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windyshores | @windyshores | Oct 5, 2023
In reply to @proliamistake "i kust want to add after taking the prolia shot and being iin so much pain..." + (show)
@proliamistake

i kust want to add after taking the prolia shot and being iin so much pain my dr ordered additional bllodwork which showed i had 2 markers for ra no symptoms or physical deformity but i had these markers and was tld i have ra and am being treated for such. i would like to know if only the 2 markers are enough for a diagnsis of raa. also when i asked my dr could the prolia have caused he said possibly so i guess i traded one pain for another. has anyone been diagnosed with ra and if so how because i am 80 yrs old and never had any symptoms of ra befure the prolia imcident also i was diagnosed in 2008 withosteoarthritis not ra right now am very confused

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I have very high autoimmune markers including lupus and scleroderma but without all the symptoms on the criteria checklist, I am not formally diagnosed, despite my many symptoms.

I would think RA, osteoarthritis and a Prolia side effect could all be explanations for pain. Osteoporosis itself does not cause pain.

I hope you have a good plan for getting off Prolia! Without transition to a bisphosphonate, bone density can worsen suddenly when stopping Prolia. But maybe you had only one shot?

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swiendels | @swiendels | Oct 6, 2023

Me too am very lost. Was given ibandronate 5 yrs ago and between had 1yr prolia. No improvement to my Dexa so now I have to decide what to do. In a mouse trap as well.

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1 reply
margoduncan | @margoduncan | Oct 6, 2023
In reply to @swiendels "Me too am very lost. Was given ibandronate 5 yrs ago and between had 1yr prolia...." + (show)
@swiendels

Me too am very lost. Was given ibandronate 5 yrs ago and between had 1yr prolia. No improvement to my Dexa so now I have to decide what to do. In a mouse trap as well.

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I hope you find clarity with some of them that share their experiences right now I’m still on alendro.. once a week I’m still taking calcium the proper way I hope I’m doing it right lol and trying to get my calcium with food and trying to work in exercise It’s not that I’m not active I am very active moving around just not exercise and been busy I don’t have a good diet plan and was forgetting my calcium pills daily etc. we shall str if that helps from loosing 😩

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ellenhines | @ellenhines | Oct 6, 2023

I have an appointment to get it at the end of the month. I look forward to the responses you receive. Have reservations to say the least. Thanks

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blblbl27 | @blblbl27 | Oct 7, 2023

You sound like me I had the same experience when I talked to a specialist Evenity was all she really offered.
I kept trying to ask about options and she finally made an appointment with a Pharmacist for me.
I found this most helpful. The Pharmacist took the time to explain options. I decided on Alendronate it seemed the least scary to start with.
However I still can’t get the courage to take that first pill.

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3 replies
windyshores | @windyshores | Oct 7, 2023
In reply to @blblbl27 "You sound like me I had the same experience when I talked to a specialist Evenity..." + (show)
@blblbl27

You sound like me I had the same experience when I talked to a specialist Evenity was all she really offered.
I kept trying to ask about options and she finally made an appointment with a Pharmacist for me.
I found this most helpful. The Pharmacist took the time to explain options. I decided on Alendronate it seemed the least scary to start with.
However I still can’t get the courage to take that first pill.

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@blblbl27 Research shows it is better to start with a bone builder like Tymlos, Forteo or Evenity. If you take alendronate first, it may affect the effectiveness of these bone builders in the future, according to my doc. You can watch Dr. Ben Leader's video online about Sequencing and Combinations, or get Keith McCormick's book "Great Bones" at your library or online.

It depends on your scores and fracture risk of course.

I chose Tymlos because I could start at a low dose and move up. The injection pen has "clicks" to measure dose and 8 clicks is full dose. I started with two and got up to 6 or 7 for most of the time I was on it. I have done a few full doses. I had a 20% gain in my spine and went from severe to borderline osteoporosis there.

This may be a good route for anyone who is scared. You can follow up in 18-24 months with alendronate and at some point maybe take a break, my doc says.

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1 reply
blblbl27 | @blblbl27 | Oct 7, 2023
In reply to @windyshores "@blblbl27 Research shows it is better to start with a bone builder like Tymlos, Forteo or..." + (show)
@windyshores

@blblbl27 Research shows it is better to start with a bone builder like Tymlos, Forteo or Evenity. If you take alendronate first, it may affect the effectiveness of these bone builders in the future, according to my doc. You can watch Dr. Ben Leader's video online about Sequencing and Combinations, or get Keith McCormick's book "Great Bones" at your library or online.

It depends on your scores and fracture risk of course.

I chose Tymlos because I could start at a low dose and move up. The injection pen has "clicks" to measure dose and 8 clicks is full dose. I started with two and got up to 6 or 7 for most of the time I was on it. I have done a few full doses. I had a 20% gain in my spine and went from severe to borderline osteoporosis there.

This may be a good route for anyone who is scared. You can follow up in 18-24 months with alendronate and at some point maybe take a break, my doc says.

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Thank you

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1 reply
sonomagal22 | @sonomagal22 | Oct 7, 2023
In reply to @blblbl27 "You sound like me I had the same experience when I talked to a specialist Evenity..." + (show)
@blblbl27

You sound like me I had the same experience when I talked to a specialist Evenity was all she really offered.
I kept trying to ask about options and she finally made an appointment with a Pharmacist for me.
I found this most helpful. The Pharmacist took the time to explain options. I decided on Alendronate it seemed the least scary to start with.
However I still can’t get the courage to take that first pill.

Jump to this post

When I took fosanex , it rotted my jaw and broke my teeth (about five years into it). This is a very common side effect. I would advise you to ask your dentist before taking

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blblbl27 | @blblbl27 | Oct 7, 2023

Yikes that’s my problem- the cures seem worse than the condition.

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lily777 | @lily777 | Oct 7, 2023

It really is life changing, honestly I felt threatened, but nobody was threatening me. So I gave myself a pep talk and started researching different alternatives. My doctor recommended Reclast it is a yearly IV infusion. I know that I need to be at peace with whatever I option I choose.

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