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

@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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My Pharmacist stated that no matter how much I give myself every day; I must not use it after my 30 th day and them must open a new pin as otherwise it is not effective after thirty days .

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@franie

My Pharmacist stated that no matter how much I give myself every day; I must not use it after my 30 th day and them must open a new pin as otherwise it is not effective after thirty days .

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@franie this is not true if you keep it refrigerated. Both my doctor and the pharmacist confirmed this and I also talked with the manufacturer, Radius. If you travel, keep it cool by wrapping it in a hand towel with cold packs (not ice) on either side in a cooler.

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@windyshores

@franie this is not true if you keep it refrigerated. Both my doctor and the pharmacist confirmed this and I also talked with the manufacturer, Radius. If you travel, keep it cool by wrapping it in a hand towel with cold packs (not ice) on either side in a cooler.

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Thank you for the information. I usually utilize most of the pin as I take 80 a day so by the end of the month there are a few doses left in it . I do not keep it in the frig after I open the pin as then I keep it at room temp.

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@franie

Thank you for the information. I usually utilize most of the pin as I take 80 a day so by the end of the month there are a few doses left in it . I do not keep it in the frig after I open the pin as then I keep it at room temp.

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You can make it last longer and I would feel safer keeping it in the refrigerator. In the door, not the coldest part of the fridge.

My kid has type 1 diabetes and insulin is supposed to be taken out of the refrigerator and warmed up for shots (she rarely does shots, but some do) for comfort reasons. But honestly colder shots of Tymlos don't hurt or feel different from warmed up ones in my experience.

Other than travel, I can't think of a good reason to keep it out but if your residence is a steady cool temperature (unlike mine) I can understand. Just don't let it get too warm (I had one pen replaced because it got too warm.)

It's really personal preference. Glad you can do the full dose!

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I have been on a low dose of Tymlos for 6 months and am currently taking 40 mcg (4 clicks). When I recently changed to a new pen, the dose seemed much stronger and I got all the side effects back. I think even refrigerating it, the strength of the Tymlos must decrease. I'm not going to take 2 months to use one pen again. I don't know how long the Tymlos stays strong after 30 days.

I take the Tymlos at bedtime. Sometimes I wake up with a slight headache but it goes away quickly. I have orthostatic hypotension, dizziness with movement especially from sitting to standing, all morning. As a fall risk, this of course is a concern. The worst side effect I am having is the nausea and stomach pain which happens off and on all day. I sometimes do have tooth pain and arthritis pain, which I think may be the hypersensitivity from the medicine. I have a blood test including bone turnover markers and a DEXA scan scheduled in 2 weeks to see if the medicine is helping.

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@drsuefowler

I have been on a low dose of Tymlos for 6 months and am currently taking 40 mcg (4 clicks). When I recently changed to a new pen, the dose seemed much stronger and I got all the side effects back. I think even refrigerating it, the strength of the Tymlos must decrease. I'm not going to take 2 months to use one pen again. I don't know how long the Tymlos stays strong after 30 days.

I take the Tymlos at bedtime. Sometimes I wake up with a slight headache but it goes away quickly. I have orthostatic hypotension, dizziness with movement especially from sitting to standing, all morning. As a fall risk, this of course is a concern. The worst side effect I am having is the nausea and stomach pain which happens off and on all day. I sometimes do have tooth pain and arthritis pain, which I think may be the hypersensitivity from the medicine. I have a blood test including bone turnover markers and a DEXA scan scheduled in 2 weeks to see if the medicine is helping.

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@drsuefowler 2 months is probably too long. I was told 6 weeks was okay. Side effects seemed to vary for me.

I had side effects similar to yours and switched to morning. My systolic blood pressure is usually around 90 so I did a blood pressure on cuff for awhile. Hyrdating and eating salty crackers helped. Ultimately, oddly, I felt better if I got up and moved around and went out vs resting. Maybe activity raised my blood pressure?

I hope you can do more than 4 clicks!

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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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Hi. Like @windyshores, after trying the full dose at first, I dialed down to fewer clicks (4). My doctor suggested it. Then, every three to four weeks I’d click up one, and I’ve now been on the full 80 mcg for two months with very mild side effects (slight headache and strong heartbeat which fades within the hour). Your body takes time to get used to the medication. The first time I tried 80 mcg, it was torture. Now it’s totally fine. I will likely feel side effects for the duration of my time on Tymlos, but that’s okay with me. I’ve learned to deal with it and it’s definitely gotten way better over time. Even if 80 mcg is not comfortable for you, a lower dose may still have therapeutic benefits. Everyone is different so do what works best for you.

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The spasms seen as if they might be the result of very low or high calcium rather than direct effects of the drug. It has been known to cause very high levels of calcium in the blood. That can cause muscle cramps.

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@windyshores

@franie this is not true if you keep it refrigerated. Both my doctor and the pharmacist confirmed this and I also talked with the manufacturer, Radius. If you travel, keep it cool by wrapping it in a hand towel with cold packs (not ice) on either side in a cooler.

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Mine has been refrigerated. I had to stop because the symptoms were too painful. Left it in the refrigerator for a few weeks. Started taking it again with a half a dose and now a whole dose for three days and no symptoms. How long do you think it will stay effective after the 30 days.?

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@jmla

Hi. Like @windyshores, after trying the full dose at first, I dialed down to fewer clicks (4). My doctor suggested it. Then, every three to four weeks I’d click up one, and I’ve now been on the full 80 mcg for two months with very mild side effects (slight headache and strong heartbeat which fades within the hour). Your body takes time to get used to the medication. The first time I tried 80 mcg, it was torture. Now it’s totally fine. I will likely feel side effects for the duration of my time on Tymlos, but that’s okay with me. I’ve learned to deal with it and it’s definitely gotten way better over time. Even if 80 mcg is not comfortable for you, a lower dose may still have therapeutic benefits. Everyone is different so do what works best for you.

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But how long do you think it’s effective after the 30 days are up being refrigerated the whole time

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