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Struggling with Tymlos medicine

Posted by darla1 @darla1, Sep 1, 2023

Hello, I’m turning 55 this November , was diagnosed with late stage osteoporosis, started Tymlos 2 weeks ago, with immediate side effects from the very first dose. My dr has had me start with 80, 8 clicks. I’m 105 lb soak and wet. My bones hurt before I began Tymlos, now the pain has become excruciating in my bones, muscle weakness, heat palpitations after each dose, headaches that never go away, and change in my mental health.
I see my Dr for the first time since beginning Tymlos next week. Which I will discuss the issues I’m having.
Has anyone made it through the 2 years? Did the drug improve their bone density? I guess what I’m asking ,
Is this worth what I’m putting myself through mind, body, and soul?

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gently | @gently | Jul 25 8:51am

stress101, it was a phase11 trial https://pmc.ncbi.nlm.nih.gov/articles/PMC5493470/ testing safety and effectiveness of the dosages. 80mcg was determined to be safe and most effective. I came across a document stating that the pens were designed for either 40 or 80mcg dosing. https://www.accessdata.fda.gov/drugsatfda_docs/nda/2017/208743Orig1s000CrossR.pdf
The calcium we take is important to the vascular system. A 2016 John's Hopkins mega study implicated calcium intake in cardiac calcification. It was an observational retrospective that generated still active scientific disagreement.

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lisaberkowitz | @lisaberkowitz | Jul 29 4:09pm
In reply to @ldd13 "@lisaberkowitz coming to terms with the diagnosis of severe osteoporosis has not been an easy process..." + (show)
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@lisaberkowitz coming to terms with the diagnosis of severe osteoporosis has not been an easy process for me but as I have begun to accept the seriousness for what it is, so far, I am grateful that I am able to give Tylmos a try and hopeful of a good outcome. It is of course helpful to hear about others experiences, the trials, but really helpful to us newcomers to hear the tribulations!

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@ldd13 Starting my Tymlos journey on Friday night. It's so helpful reading about other people's experiences & tips. Forever grateful.

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osteopatient2026 | @osteopatient2026 | Jul 29 5:40pm
In reply to @lisaberkowitz "@ldd13 Starting my Tymlos journey on Friday night. It's so helpful reading about other people's experiences..." + (show)
Profile picture for lisaberkowitz @lisaberkowitz

@ldd13 Starting my Tymlos journey on Friday night. It's so helpful reading about other people's experiences & tips. Forever grateful.

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@lisaberkowitz
What are your score numbers? Did you get a calcium, pinp and CTX to establish baseline?

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ldd13 | @ldd13 | Jul 29 5:43pm

@lisaberkowitz Wishing you the best on your Tymlos journey. Just to share a bit more encouraging data from my Tymlos journey -I am now 21 days in and titrated up to 80mcg 5 days ago and so far I have had no side effects or concerns at all. I am doing the injections in evening in my belly, sleeping well and have no residual effects in the morning. It was very daunting to take that first step, but I am so glad to have. Again, wishing you well.

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lisaberkowitz | @lisaberkowitz | Jul 29 6:19pm
In reply to @osteopatient2026 "@lisaberkowitz What are your score numbers? Did you get a calcium, pinp and CTX to establish..." + (show)
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@lisaberkowitz
What are your score numbers? Did you get a calcium, pinp and CTX to establish baseline?

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@osteopatient2026 I was on Evenity for 11 months 4/25 - 3/26 for osteoporosis. Dexa last yr was -2.5 on forearm & - 2.7 on his. After Evenity, it was -2.1 on forearm. & -2.5. Better, but not as good as I hoped. I need a 2nd spinal fusion surgery in the Fall, so Tymlos was recommended to strengthen my bones more to make sure the fusion takes. Fingers crossed 🤞

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lisaberkowitz | @lisaberkowitz | Jul 29 6:24pm
In reply to @ldd13 "@lisaberkowitz Wishing you the best on your Tymlos journey. Just to share a bit more encouraging..." + (show)
Profile picture for ldd13 @ldd13

@lisaberkowitz Wishing you the best on your Tymlos journey. Just to share a bit more encouraging data from my Tymlos journey -I am now 21 days in and titrated up to 80mcg 5 days ago and so far I have had no side effects or concerns at all. I am doing the injections in evening in my belly, sleeping well and have no residual effects in the morning. It was very daunting to take that first step, but I am so glad to have. Again, wishing you well.

Jump to this post

@ldd13 Thank you so much for sharing & so glad to hear you're having a good experience. I plan on starting slow (2-3 clicks for the first 3 days) & gradually increase the dosage based on my to tolerance level. Wishing you all the best.

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