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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Good morning. I’ve been on Tymlos for a week and a half. The main side effect that’s pretty bothersome is headaches. I’m taking the medicine in the evening and headache is worse in the morning, but pretty much hangs around all day. I have been taking either Advil, or Tylenol neither help much. Any suggestions would be most appreciated. Thank you.

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Has anyone taken Reclast? I am on Tymlos for now but then when I go off if it , my Dr wants me to go on Reclast. I had no problem with Prolia

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@kaa1

Good morning. I’ve been on Tymlos for a week and a half. The main side effect that’s pretty bothersome is headaches. I’m taking the medicine in the evening and headache is worse in the morning, but pretty much hangs around all day. I have been taking either Advil, or Tylenol neither help much. Any suggestions would be most appreciated. Thank you.

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@kaa1, I also experienced the persistent headache, unresponsive to medication, for the first several months of Tymlos. It does improve over time. Just try to hang in there and visualize new bone being laid down 😊

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@ymv

@kaa1, I also experienced the persistent headache, unresponsive to medication, for the first several months of Tymlos. It does improve over time. Just try to hang in there and visualize new bone being laid down 😊

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Thank you!

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I posted a few days ago about headaches after two weeks on Tymlos. I think I can deal with that. But now I am also experiencing extreme fatigue. It’s hard for me to have the energy to do the things I need to do. Plus, I’m supposed to be going on a fairly intense hiking trip in June and I should be training but I have no energy. Has anyone experience fatigue? Do you have any suggestions. Should I request bloodwork? Maybe it’s too much calcium in the blood? Also, I do not have the pen with the option to adjust the dose. It has only 80 as an option. Thanks for any suggestions. Be well.

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@kaa1

I posted a few days ago about headaches after two weeks on Tymlos. I think I can deal with that. But now I am also experiencing extreme fatigue. It’s hard for me to have the energy to do the things I need to do. Plus, I’m supposed to be going on a fairly intense hiking trip in June and I should be training but I have no energy. Has anyone experience fatigue? Do you have any suggestions. Should I request bloodwork? Maybe it’s too much calcium in the blood? Also, I do not have the pen with the option to adjust the dose. It has only 80 as an option. Thanks for any suggestions. Be well.

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@kaa1 your pen should have "clicks" if you turn it slowly. Each click is 10mcg. It is not marked. Hope you can see what I mean! Try 4 clicks and then move up to 6, or 7. I was never really able to do the full 8.

I did have fatigue but found that getting up and out helped it a lot. It's hard getting over that bump in the morning but it did ease up for me.

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@kaa1

Good morning. I’ve been on Tymlos for a week and a half. The main side effect that’s pretty bothersome is headaches. I’m taking the medicine in the evening and headache is worse in the morning, but pretty much hangs around all day. I have been taking either Advil, or Tylenol neither help much. Any suggestions would be most appreciated. Thank you.

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I had the 24/7 headache, the only thing that worked was lots of water. Do your teeth hurt? I can’t seem to get rid of the tooth pain.

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@windyshores

@kaa1 your pen should have "clicks" if you turn it slowly. Each click is 10mcg. It is not marked. Hope you can see what I mean! Try 4 clicks and then move up to 6, or 7. I was never really able to do the full 8.

I did have fatigue but found that getting up and out helped it a lot. It's hard getting over that bump in the morning but it did ease up for me.

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Thank you very much for your reply. I see that I have the clicks on the pen. Will ask my doctor about it.

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@cbsue45

I had the 24/7 headache, the only thing that worked was lots of water. Do your teeth hurt? I can’t seem to get rid of the tooth pain.

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Thank you for your reply. I don’t have any teeth pain as of yet (thankfully). I hope this will subside for you. Best wishes.

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@kaa1

Thank you very much for your reply. I see that I have the clicks on the pen. Will ask my doctor about it.

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@kaa1 your doctor may be unfamiliar with the idea of starting low. My doctor at a major teaching hospital was at first amused that I had done thus and now uses it in their practice for those who cannot at first tolerate full dose. Your doctor cannot prescribe this. You can do a lower dose on your own and tell the doc about it. Make sure to refrigerate he pen if doing a lower dose so it lasts longer than 30 days.

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