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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lnl | @lnl | May 19, 2023
In reply to @windyshores "@lnl my side effects were actually better in the morning. I think I have written that..." + (show)
@windyshores

@lnl my side effects were actually better in the morning. I think I have written that to you before but just in case. Congrats on getting to 4. My doc was happy with 6. I still alternate between 6 and 7 depending on what I am doing. I get more side effects at 7 and cannot do 8, even after 18 months. My gains have been terrific. Good luck with this!

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Thank you. You are one of the people I look to for advice and encouragement. Yes, we've talked about the morning/evening thing. Right now--because of needing to lie down for at least 20 minutes after the injection-- evening is best. This approach could change for any number of reasons. I obviously have no idea where I'll top out with the clicks, but I'll keep this group posted in the belief that it could help others.

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1 reply
windyshores | @windyshores | May 19, 2023
In reply to @lnl "Thank you. You are one of the people I look to for advice and encouragement. Yes,..." + (show)
@lnl

Thank you. You are one of the people I look to for advice and encouragement. Yes, we've talked about the morning/evening thing. Right now--because of needing to lie down for at least 20 minutes after the injection-- evening is best. This approach could change for any number of reasons. I obviously have no idea where I'll top out with the clicks, but I'll keep this group posted in the belief that it could help others.

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I was staying in bed after my injection but for the last half of treatment I found I handled side effects much better if I got up and out! The wooziness, heart palps etc. were worse when I lay down!! Everyone is different and this is so counterintuitive. But now I inject and start my day- even go to art class right after shot. Not saying that is true for anyone else.....For me the big thing was risk of afib at night- that is why I switched.

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jmmjml | @jmmjml | May 19, 2023
In reply to @windyshores "@jmmjml I am allergic to dairy so I do take calcium (citrate, sometimes carbonate). I aim..." + (show)
@windyshores

@jmmjml I am allergic to dairy so I do take calcium (citrate, sometimes carbonate). I aim a little lower than suggested: 800-1000 mg/day. I also take gummies for D3 (2000) and combined D3(1000) + K2 (45mcg). I read that Tymlos "eats D3) and at a dose of 3000/day my D3 has remained stable.

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Wow thank you for more amazing information. My doc literally filled the rx, I received it and that was it. Do you follow up with bloodwork after starting tymlos? If so at what frequency and what tests? Sorry if I’m asking too many questions! Thank you again!

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jmmjml | @jmmjml | May 19, 2023
In reply to @lnl "Here's another data point about ramping up for what it's worth to you: I'm five weeks..." + (show)
@lnl

Here's another data point about ramping up for what it's worth to you: I'm five weeks in, and I've managed to get to a 4. (I'm really proud of this, by the way.) I started at a 1 and stayed there for over a week. I get a really rapid heart rate, but elevating my legs after the injection helps with that. I've gotten a mild headache at 1-3 but a more significant one at 4. I inject at night, and every side effect is gone by morning. I'm still obviously in the earliest of stages with this medication, I still don't like taking it, and I'm still scared of it. But here I am-- and here we all are. This community of women who share their experiences and give each other encouragement has meant everything to me.

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Thank you so much and congrats on your progress!

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windyshores | @windyshores | May 19, 2023
In reply to @jmmjml "Wow thank you for more amazing information. My doc literally filled the rx, I received it..." + (show)
@jmmjml

Wow thank you for more amazing information. My doc literally filled the rx, I received it and that was it. Do you follow up with bloodwork after starting tymlos? If so at what frequency and what tests? Sorry if I’m asking too many questions! Thank you again!

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@jmmjml my doc tested D and calcium levels, maybe aldosterone-? Don't remember! Three months in and after one year. The main concern is that calcium levels not be too high. I also took my blood pressure early on because I run low and Tymlos lowers blood pressure. I hydrate before the shot.

McCormick wanted baseline P1NP and CTX and I am having a P1NP next week to see if Tymlos is still working. CTX will be for checking on Reclast when I have it.

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mmodestti | @mmodestti | May 19, 2023
In reply to @jmmjml "I am about to start tymlos and had a friend who just started complaining of dizziness,..." + (show)
@jmmjml

I am about to start tymlos and had a friend who just started complaining of dizziness, nausea and headache. So I am reading about a lot of people on this thread dose up. How do you do that? What do you look for on the pen and did you start at two for a week then four for a week? how did people ramp up?
Thank you so much!

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I started at 3 clicks, and went up a click every 2 days.
I am now at 7 clicks. (almost at full dose) and side effects have been scarce and very mild.
I made an Excel table to keep track of the dosing and side effects. So far, so good.

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1 reply
jmmjml | @jmmjml | May 19, 2023

Thank you. I’m going to make an appointment with dr. McCormick. Sounds like he’s very helpful.

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jmmjml | @jmmjml | May 19, 2023
In reply to @mmodestti "I started at 3 clicks, and went up a click every 2 days. I am now..." + (show)
@mmodestti

I started at 3 clicks, and went up a click every 2 days.
I am now at 7 clicks. (almost at full dose) and side effects have been scarce and very mild.
I made an Excel table to keep track of the dosing and side effects. So far, so good.

Jump to this post

Thank you so much!

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windyshores | @windyshores | May 19, 2023

Just want to add that my doc told me even a half dose at 4 clicks would be helpful.

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lnl | @lnl | May 30, 2023

Hi, Everyone-- Lisa checking in, as promised. I've got a report and a question about a side effect. Report: I am in week 7 of Tymlos and have managed to make it up to 5 clicks. This has been a struggle as many of you know. The only side effect I am left with is the tachycardia, which I manage by elevating my legs for about 10 minutes after the injection. It absolutely works. Question: Have any of you who are ahead of me experienced hair loss? It's starting for me. It's not that clumps of hair are falling out; rather, my hair is thinning quickly-- I am losing lots of single hairs. I know it's not listed as an official side effect, but women on this site and Inspire have discussed it. Basically, does it stop the way many other side effects go away as your body gets used to the drug? Thanks for any info.

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