1. < Osteoporosis & Bone Health

I am afraid of trying Tymlos and other drugs due to side effects

Posted by mkav2023 @mkav2023, May 7, 2023

How do others handle the fear of side effects, as well as the very real side effects, from Tymlos and other osteoporosis drugs?

I am 68, physically active, and feel fine with no fracture history. When I began developing osteopenia years ago, I was put on Fosomax and large amounts of calcium and D for about five years with no positive results, and sure enough, my osteopenia became osteoporosis.

My doctor now is recommending Tymlos due to my worsening Dexascan scores (worse T-score is -3.3 spine, and other T-scores are in -3.0 range). I have read a great deal (pro and con) about Tymlos and its side effects, and I know that even if Tymlos helps, after two years on Tymlos, then I have to go on another drug. I believe the odds are I will encounter a drug sooner or later with serious side effects that will drastically hurt my quality of life.

Any advice from those of you who have been on Tymlos and other drugs with side effects is greatly appreciated. Thank you!

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windyshores | @windyshores | May 20, 2023
In reply to @leeosteo "windyshores, how do you explain to your PCP that your working with Dr McCormick? And that..." + (show)
@leeosteo

windyshores, how do you explain to your PCP that your working with Dr McCormick? And that Dr McCormick is suggesting specific tests?

I met with Dr McCormick last Wednesday. He suggested a few tests and I'm also going to ask my PCP if he will order them. This is going to be an uphill battle to ask for these tests. My PCP calls these tests "boutique" tests (:>).

Jump to this post

My PCP didn't have any problem with it. I was going to bring in McCormick's new 700 page book "Great Bones" to show the PCP but I forgot it and it didn't matter. My insurance covers them!

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1 reply
sarahstuart Sarah Stuart McIlvain | @sarahstuart | May 20, 2023
In reply to @leeosteo "windyshores, how do you explain to your PCP that your working with Dr McCormick? And that..." + (show)
@leeosteo

windyshores, how do you explain to your PCP that your working with Dr McCormick? And that Dr McCormick is suggesting specific tests?

I met with Dr McCormick last Wednesday. He suggested a few tests and I'm also going to ask my PCP if he will order them. This is going to be an uphill battle to ask for these tests. My PCP calls these tests "boutique" tests (:>).

Jump to this post

Osteoporosis is a boutique body failure and needs individual treatment. One size doesn't fit all and one drug won't cure all of us.

REPLY
1 reply
leeosteo | @leeosteo | May 20, 2023
In reply to @windyshores "My PCP didn't have any problem with it. I was going to bring in McCormick's new..." + (show)
@windyshores

My PCP didn't have any problem with it. I was going to bring in McCormick's new 700 page book "Great Bones" to show the PCP but I forgot it and it didn't matter. My insurance covers them!

Jump to this post

Your really lucky to have a PCP that will work with you.

REPLY
leeosteo | @leeosteo | May 20, 2023
In reply to @sarahstuart "Osteoporosis is a boutique body failure and needs individual treatment. One size doesn't fit all and..." + (show)
@sarahstuart

Osteoporosis is a boutique body failure and needs individual treatment. One size doesn't fit all and one drug won't cure all of us.

Jump to this post

I agree. I just wish most PCP and Endos would agree! I feel like I have a masters degree in osteoporosis and trying to explain what I've learned with my doctor. Who by the way gets offended by this.

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njhornung | @normahorn | May 20, 2023

I wish doctors would stop dismissing our concerns about, or experiences with, adverse effects.

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gulfcoastwoman | @gulfcoastwoman | May 21, 2023

Our situation is very similar. I have also been on Prolia ( no major side effects) but even though my spine improved to normal my hips continued to decline (-3.2). I’m 71, physically active, no fractures & am very afraid of losing my quality of life. I’m doing lots of resistance & strength exercises, work out with a personal trainer twice a week, supplements, wear a weighted vest for walking. I see an endocrinologist next month & hope to get more info.

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colely | @colely | May 21, 2023
In reply to @leeosteo "windyshores, how do you explain to your PCP that your working with Dr McCormick? And that..." + (show)
@leeosteo

windyshores, how do you explain to your PCP that your working with Dr McCormick? And that Dr McCormick is suggesting specific tests?

I met with Dr McCormick last Wednesday. He suggested a few tests and I'm also going to ask my PCP if he will order them. This is going to be an uphill battle to ask for these tests. My PCP calls these tests "boutique" tests (:>).

Jump to this post

Hi. I see an Integrative, Internal Medicine doctor, from time to time. The tests he does are called, " Exotic" tests by my PCP. My quality of life would be even more hellish, without the more Sophisticated, LEGITIMATE tests that have pointed to more sophisticated, better, treatments.

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windyshores | @windyshores | May 21, 2023

I don't think the CTX and P1NP are "exotic" but I do think that some tests done by integrative docs can be seen that way, because they are out of the mainstream and not covered by insurance. CTX and P1NP are covered by insurance.

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alicevondall | @alicevondall | Aug 7 8:02pm

I was very fearful too and researched all the medications. I started on Tymlos today. I do have a burst fracture at T11. We are trying g to let it heal on its own, but it has been painful. My fears of fracturing my hip or more of my spine was greater than the fear of the meds and that is how I overcame being scared of the side effects. I also pray and will continue to do so every time I inject the Tymlos. I do want stronger bones and some quality of life for myself, my children, and grandchildren.

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1 reply
babbsjoy | @babbsjoy | Aug 8 8:39am
In reply to @alicevondall "I was very fearful too and researched all the medications. I started on Tymlos today. I..." + (show)
@alicevondall

I was very fearful too and researched all the medications. I started on Tymlos today. I do have a burst fracture at T11. We are trying g to let it heal on its own, but it has been painful. My fears of fracturing my hip or more of my spine was greater than the fear of the meds and that is how I overcame being scared of the side effects. I also pray and will continue to do so every time I inject the Tymlos. I do want stronger bones and some quality of life for myself, my children, and grandchildren.

Jump to this post

@alicevondall
Thank you for sharing your experience and reasoning! My first dose of Tymlos is “out for delivery” from the specialty pharmacy as I type this. Your post reminded me to be brave, pray and trust and do what I can. And for me, besides diet and exercise, Tymlos is my well-researched path as well!

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