1. < Osteoporosis & Bone Health

Tymlos side effects I've encountered

Posted by anniesan @anniesan, Oct 2, 2022

Hi. I started Tymlos in February 2022 and about a month after starting it I began experiencing excruciating muscle spasms, esp in upper thighs and feet, neuropathy, as well as debilitating hip, leg, and back pain. My doctor wanted me to try and stay on it for at least a year, but I absolutely could not go on living with the pain I experienced. I stopped taking the Tymlos completely 6 days ago and all my symptoms have subsided. Has anyone else experienced these side effects while on Tymlos?

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windyshores | @windyshores | Jul 6, 2023
In reply to @txmom "@windyshores , I finished Tymlos after two years and am trying a vitamin regimen. Bone density..." + (show)
@txmom

@windyshores , I finished Tymlos after two years and am trying a vitamin regimen. Bone density showed a 10% gain in my spine and is holding after 3 months. 5000 units of Vit D, extra calcium, and zinc and am adding boron, plus one a day vitamin and Boost since I have lost so much weight. Good luck with your venture.

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My docs say I will lose all my gains if I don't "lock in" with Reclast (half dose). I will do a holistic regimen after that, with monitoring.

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ans | @ans | Jul 7, 2023
In reply to @windyshores "From the link posted by @amrh: and why are docs prescribing Tymlos or Forteo after Prolia?..." + (show)
@windyshores

From the link posted by @amrh: and why are docs prescribing Tymlos or Forteo after Prolia? Is it mostly PCP's?

"In postmenopausal osteoporotic women switching from teriparatide to denosumab, BMD continued to increase whereas switching from denosumab to teriparatide results in progressive or transient bone loss. Combination denosumab/teriparatide therapy followed by denosumab alone results in the largest 4-year increases in hip and wrist BMD. These results should be considered when choosing the initial and subsequent management of postmenopausal osteoporotic patients."

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Thanks @windyshores for the concise summary of the long but excellent article @amth posted.
Good luck to all as we navigate conversations with our drs seeking the best treatment!!!

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1 reply
windyshores | @windyshores | Jul 7, 2023

@cloud60 and others....I forget which thread we were discussing blood pressure on.

I did an experiment. I did Tymlos two days in a row , and rested for 3 hours. Blood pressure remained the same, low under 95 systolic. Today I did the shot and took a walk and blood pressure was 122 systolic. I am wondering if this is why I have fewer side effects when I get up and out. I am going to mention to my docs.

My kidney doc wants me to raise my bp so I am playing around with salt, hydration and exercise all of which might also help Tymlos side effects for me, since I have low bp and Tymlos tends to lower it.

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1 reply
cloud60 | @cloud60 | Jul 7, 2023
In reply to @windyshores "@cloud60 and others....I forget which thread we were discussing blood pressure on. I did an experiment...." + (show)
@windyshores

@cloud60 and others....I forget which thread we were discussing blood pressure on.

I did an experiment. I did Tymlos two days in a row , and rested for 3 hours. Blood pressure remained the same, low under 95 systolic. Today I did the shot and took a walk and blood pressure was 122 systolic. I am wondering if this is why I have fewer side effects when I get up and out. I am going to mention to my docs.

My kidney doc wants me to raise my bp so I am playing around with salt, hydration and exercise all of which might also help Tymlos side effects for me, since I have low bp and Tymlos tends to lower it.

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This is helpful to me but I don’t even want to drive or walk when I get lightheaded

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kakilong54 | @kakilong54 | Jul 8, 2023
In reply to @ans "Thanks @windyshores for the concise summary of the long but excellent article @amth posted. Good luck..." + (show)
@ans

Thanks @windyshores for the concise summary of the long but excellent article @amth posted.
Good luck to all as we navigate conversations with our drs seeking the best treatment!!!

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Where is the article?

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1 reply
ans | @ans | Jul 8, 2023
In reply to @kakilong54 "Where is the article?" + (show)
@kakilong54

Where is the article?

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It was on the July 6 th postings under “Tymlos side effects I’ve encountered “. @amth put up the link
https://www.ncbi.nlm.nih.
gov/pmc/articles/PMC4620731
Good luck finding it!

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omgirl | @omgirl | Jul 9, 2023
In reply to @txmom "@windyshores , I finished Tymlos after two years and am trying a vitamin regimen. Bone density..." + (show)
@txmom

@windyshores , I finished Tymlos after two years and am trying a vitamin regimen. Bone density showed a 10% gain in my spine and is holding after 3 months. 5000 units of Vit D, extra calcium, and zinc and am adding boron, plus one a day vitamin and Boost since I have lost so much weight. Good luck with your venture.

Jump to this post

Be careful with the high Vit D dosage as can cause Vit D toxicity, don’t know much about increasing the other supplements although higher dose calcium (even normal supplementation) has been related to kidney stones and you definitely don’t want to experience passing one as extremely painful..

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txmom | @txmom | Jul 10, 2023

Thanks @windyshores ! I had not heard this. I had been low on Vit D so the recommendation on that was from the doctor. I will cut back on calcium supplements as I get a lot from food sources as well as supplements.

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | Jul 10, 2023

To Tymlos users: I did take biology in 9th grade, and chemistry in 11th grade ('59 -'60). In college there was some sort of Science Course for Liberal Arts Majors which I took and passed. So I'm willing to chat with T. users who are scared, confused, or isolated. No cures, but perhaps a good giggle.

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | Jul 10, 2023

The problem with no side affects means that there is no good story to tell, and there is always some anxiety about results. Maybe a mathematician could create a formula that we could put on t-shirts.

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