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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candy209 | @candy209 | May 19, 2023
In reply to @windyshores "You can do Tymlos first and follow with Evenity, but not the other way around. Evenity..." + (show)
@windyshores

You can do Tymlos first and follow with Evenity, but not the other way around. Evenity is very potent and fast so that may be why McCormick suggested it, but I chose Tymlos because that left the option of Evenity afterward.

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I like that idea as well. I really don’t ever want to get reclast but that might happen one day.

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1 reply
windyshores | @windyshores | May 19, 2023
In reply to @candy209 "I like that idea as well. I really don’t ever want to get reclast but that..." + (show)
@candy209

I like that idea as well. I really don’t ever want to get reclast but that might happen one day.

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@candy209 a bisphosphonate, whether Reclast or something else, is inevitable... gains from every single other med need to be 'locked in' with one!

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1 reply
candy209 | @candy209 | May 19, 2023
In reply to @windyshores "@candy209 a bisphosphonate, whether Reclast or something else, is inevitable... gains from every single other med..." + (show)
@windyshores

@candy209 a bisphosphonate, whether Reclast or something else, is inevitable... gains from every single other med need to be 'locked in' with one!

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Ok. Well my stomach can’t take an oral so reclast is what it will be I suppose. I hope I can get into your doc or one like yours that will let me try a very small dose to start.
All the best to you.
Candy

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doremi | @doremi | May 19, 2023
In reply to @windyshores "You can do Tymlos first and follow with Evenity, but not the other way around. Evenity..." + (show)
@windyshores

You can do Tymlos first and follow with Evenity, but not the other way around. Evenity is very potent and fast so that may be why McCormick suggested it, but I chose Tymlos because that left the option of Evenity afterward.

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why can you not do Tymlos after Evenity?

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windyshores | @windyshores | May 20, 2023

I believe 1) because Evenity "turbocharges" growth (read that term somewhere) so there isn't much left for Tymlos to do and 2) because Tymlos is less effective after any med with anti-resorptive effects and 3) that is what I was told!!

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | May 20, 2023
In reply to @candy209 "I feel the same. Just about to start tymlos. I am having some dental issues and..." + (show)
@candy209

I feel the same. Just about to start tymlos. I am having some dental issues and have been told to go ahead and start tymlos. Praying it goes well.
Best wishes to you as you start this journey as well.

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I opted for Tymlos as my mother lost all of her teeth on the P medication. I'm willing getting my teeth cleaned 4x/yr as my dentist said it is easier to treat any oral issue early. I've only been on Tymlos for 7 weeks, so no insight to pass on.

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2 replies
windyshores | @windyshores | May 20, 2023
In reply to @sarahstuart "I opted for Tymlos as my mother lost all of her teeth on the P medication...." + (show)
@sarahstuart

I opted for Tymlos as my mother lost all of her teeth on the P medication. I'm willing getting my teeth cleaned 4x/yr as my dentist said it is easier to treat any oral issue early. I've only been on Tymlos for 7 weeks, so no insight to pass on.

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@sarahstuart as you probably know, Tymlos does not cause dental issues 🙂 Sorry about your mother on Prolia!

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1 reply
candy209 | @candy209 | May 20, 2023
In reply to @sarahstuart "I opted for Tymlos as my mother lost all of her teeth on the P medication...." + (show)
@sarahstuart

I opted for Tymlos as my mother lost all of her teeth on the P medication. I'm willing getting my teeth cleaned 4x/yr as my dentist said it is easier to treat any oral issue early. I've only been on Tymlos for 7 weeks, so no insight to pass on.

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I was shocked by my teeth. I am so good at taking care of my teeth. Cleanings every three months.
What I just learned is my second tooth that needs a root canal is a 20 year old crown. Same dentist all these years. Seems like he should have told me it’s time to replace it. Such a shame.
So now I will have a root canal. Was going to start tymlos next week but feel I should wait until after root canal.
I did read several places that tymlos can heal the jaw. Hope it’s true.

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | May 20, 2023
In reply to @windyshores "@sarahstuart as you probably know, Tymlos does not cause dental issues :) Sorry about your mother..." + (show)
@windyshores

@sarahstuart as you probably know, Tymlos does not cause dental issues 🙂 Sorry about your mother on Prolia!

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Happy anecdote: Syracuse, NY has an A+ chocolate shop. So for celebrations I would send my mother a pound of assorted chocolates (no nuts, no caramel). When she moved into Nursing Care, I sent chocolates monthly so the attendant could place one in mother's mouth so she could change the taste of pureed/ground food. She died at 102.

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leeosteo | @leeosteo | May 20, 2023
In reply to @windyshores "Hi folks, I am getting a second MD opinion and also went to Dr. McCormick who..." + (show)
@windyshores

Hi folks, I am getting a second MD opinion and also went to Dr. McCormick who wrote two books on osteoporosis, as you may know. I want to fully investigate the option of Evenity after Tymlos and then Reclast. I am having a P1NP test to see if the Tymlos is still working. My endo doesn't do this and he may be right, but McCormick suggested it and PCP agreed to order it. If Tymlos is still working I will do a few months more.

I am concerned about the femur neck which went from -4.1 to -3/6 which is still not good. Hip and esp. spine are good but could be better too. (_2.9 hip and -2.5 spine now!).

Once I am done with bone-building I will do a 20% dose of Reclast to see how I handle it and a second dose of my choosing in 3 months. Collagen CTX tests can monitor as can DEXA. I have been told a break in meds is very possible with continued monitoring. I am also seeing a nephrologist before Reclast because my eGFR is 36-41 and Reclast affects the kidneys. Phew!

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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 (:>).

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