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 16, 2023

I had 20% gain in spine (almost out of osteoporosis from severe) and 9% gain in hip. Just to encourage you!

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2 replies
mspatart | @mspatart | May 17, 2023

These are great endorsements for Tymlos. I am taking heart that this might be the solution I am looking for. I see my doctor next week and we will discuss it.
PJ in San Jose

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leeosteo | @leeosteo | May 18, 2023
In reply to @windyshores "I had 20% gain in spine (almost out of osteoporosis from severe) and 9% gain in..." + (show)
@windyshores

I had 20% gain in spine (almost out of osteoporosis from severe) and 9% gain in hip. Just to encourage you!

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Windyshores, this is great news for you using Tymlos. I believe you were going to follow up Tymlos with Reclast to lock in the gains. Assuming you lock in the gains with another med, did your doctors indicate how long the combined gain may last? Are you now done with meds forever (smile)?

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | May 18, 2023
In reply to @windyshores "I had 20% gain in spine (almost out of osteoporosis from severe) and 9% gain in..." + (show)
@windyshores

I had 20% gain in spine (almost out of osteoporosis from severe) and 9% gain in hip. Just to encourage you!

Jump to this post

Impressive! and 3 cheers for doing it your way!!!

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windyshores | @windyshores | May 18, 2023

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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1 reply
jmmjml | @jmmjml | May 18, 2023
In reply to @lnl "I have been on Tymlos for just short of one month, so I'm hardly an expert..." + (show)
@lnl

I have been on Tymlos for just short of one month, so I'm hardly an expert but I hope my experiences will help you. I joined this community to hear from others who were further down the road than I was, so that's what I can offer you.
I was terrified to go on Tymlos for all of the reasons. I am 63, small, active, in otherwise great health, and feared ruining all that. My worst number was -3. I also think of myself as someone who gets every side effect there is for everything--which really isn't true-- but close.
I am ramping up the "clicks" very slowly-- heading into week 4, I just administered my first "3" dose. The side effect I get is the increased heart rate. It is scary and uncomfortable, but apparently not dangerous. The Tymlos nurse (and yes, if you start the drug, get assigned a Tymlos nurse-- mine is wonderful--and yes, I am aware of who she works for) recently suggested I lie down and elevate my legs to lessen the effect. It totally worked. This gets into the issue of morning or evening injections (you'll find a lot about that on this site). I started out with evening, but then I found myself dreading the night coming, so I switched to morning-- when I'd be more distracted. But now that I'm lying down after the shot, I'm going back to evenings. I have figured out how to do the injections, so I don't dread them and the evening so much. I could keep talking, but I'll stop for now.
I will be glad to answer any other questions that I can.
Good luck.

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Thank you for your helpful tips. I too am terrified to start tymlos but your tips give me courage.

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1 reply
candy209 | @candy209 | May 19, 2023
In reply to @jmmjml "Thank you for your helpful tips. I too am terrified to start tymlos but your tips..." + (show)
@jmmjml

Thank you for your helpful tips. I too am terrified to start tymlos but your tips give me courage.

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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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2 replies
windyshores | @windyshores | May 19, 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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@candy209 Tymlos does not affect or cause dental issues.

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1 reply
candy209 | @candy209 | May 19, 2023
In reply to @windyshores "@candy209 Tymlos does not affect or cause dental issues." + (show)
@windyshores

@candy209 Tymlos does not affect or cause dental issues.

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Thank goodness and thank you for all your support. I appreciate you so much. I had a biopsy of my jaw due to a swollen area that was painful on my jaw below where a tooth was extracted. All they found was a small area of dead bone Now I have pain on another tooth an old crown and hope it’s due to its age and not the osteo. My numbers are in the 5’s so I am worried.
I am also seeing dr Mc cormick. He is leaning towards evenity but I am worried about my dental issues with that. So most likely tymlos is for me.

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1 reply
windyshores | @windyshores | May 19, 2023
In reply to @candy209 "Thank goodness and thank you for all your support. I appreciate you so much. I had..." + (show)
@candy209

Thank goodness and thank you for all your support. I appreciate you so much. I had a biopsy of my jaw due to a swollen area that was painful on my jaw below where a tooth was extracted. All they found was a small area of dead bone Now I have pain on another tooth an old crown and hope it’s due to its age and not the osteo. My numbers are in the 5’s so I am worried.
I am also seeing dr Mc cormick. He is leaning towards evenity but I am worried about my dental issues with that. So most likely tymlos is for me.

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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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