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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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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@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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The pen has 8 clicks so you just turn it past 2 clicks or whatever you want. The pace of going up really depends too. I think I took 4-6 weeks to get up to 6 clicks and then settled on 7 for the most part.

I kind of started discussing this here and I need to tell the company that this forum is increasing use because when people ramp up, they don't quit!!

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@windyshores

The pen has 8 clicks so you just turn it past 2 clicks or whatever you want. The pace of going up really depends too. I think I took 4-6 weeks to get up to 6 clicks and then settled on 7 for the most part.

I kind of started discussing this here and I need to tell the company that this forum is increasing use because when people ramp up, they don't quit!!

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I am so grateful for your reply as in general I get headaches and occasional vertigo so I was hesitant to start. Did you start 2,4,6,7 over a course of 4-6 weeks? Also after say 4 clicks, you inject, then, do you turn the pen to eight to expel fluid or just turned the pen back to zero. Thank you so much.

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@jmmjml

I am so grateful for your reply as in general I get headaches and occasional vertigo so I was hesitant to start. Did you start 2,4,6,7 over a course of 4-6 weeks? Also after say 4 clicks, you inject, then, do you turn the pen to eight to expel fluid or just turned the pen back to zero. Thank you so much.

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I also get headaches (migraines) and vertigo (before Tymlos).

There is no formula for ramping up. I did 2 then moved up one when side effects eased at each level. If side effects weren't bad at a certain level, I would just add a click. The pen automatically returns to "0" after you inject. Pinch your skin, stick the needle in and let the skin go at the moment you inject.

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@windyshores

I also get headaches (migraines) and vertigo (before Tymlos).

There is no formula for ramping up. I did 2 then moved up one when side effects eased at each level. If side effects weren't bad at a certain level, I would just add a click. The pen automatically returns to "0" after you inject. Pinch your skin, stick the needle in and let the skin go at the moment you inject.

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Terrific thank you so much!

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@windyshores

I also get headaches (migraines) and vertigo (before Tymlos).

There is no formula for ramping up. I did 2 then moved up one when side effects eased at each level. If side effects weren't bad at a certain level, I would just add a click. The pen automatically returns to "0" after you inject. Pinch your skin, stick the needle in and let the skin go at the moment you inject.

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Also, forgot to ask, do you take calcium In addition to the tymlos and if so, how much?

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@windyshores

I also get headaches (migraines) and vertigo (before Tymlos).

There is no formula for ramping up. I did 2 then moved up one when side effects eased at each level. If side effects weren't bad at a certain level, I would just add a click. The pen automatically returns to "0" after you inject. Pinch your skin, stick the needle in and let the skin go at the moment you inject.

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I agree, start at a lower dose. I do the dose before bed so I don’t have to deal with dizziness, jaw pain is still a big problem, only at 3 clicks. Going slow.

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@jmmjml

Terrific thank you so much!

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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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@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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@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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@jmmjml

Also, forgot to ask, do you take calcium In addition to the tymlos and if so, how much?

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@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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