Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

@data2net you may be misunderstanding the posts about lower doses. That is a method to help get onto a therapeutic dose. Some of us small females also do well on a slightly reduced dose.

I believe people should try a full dose but going down to a lower dose and then letting the body get used to the drug so it is possible to go up, it a lot better than quitting.

Perhaps you have not experienced sensitivities to meds. My doctor is a top world class endocrinologist and has been with me for many years while I tried to get on medications. He is happy with the method of lowering the dose and titrating up, and uses it with other patients. I did not ask his permission: I told him after the fact. He prescribes lower doses for me for many meds.

I never did a full dose. The highest I got was 7 out of 8 clicks on the pen. I had a 20% gain in spine going from severe to borderline.

Also, my doctor has said it is okay to take some days off.

We try to share experiences here and not tell anyone else what to do. I hope you can do well on a full dose but understand that some of us cannot start there. We need to get onto a therapeutic dose (my doc was happy with 3/4 dose) any way we can.

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I just called the manufacturer of Tymlos and they told me that the pen is set to only work at 80mcg and cannot be lowered. Does anyone know if this information is accurate?

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@shar1234

I just called the manufacturer of Tymlos and they told me that the pen is set to only work at 80mcg and cannot be lowered. Does anyone know if this information is accurate?

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That is completely false. The pen literally starts at zero, and you have to click it eight times to get up to 80. Many people here could not tolerate 80, but had better luck clicking to a lower dose.

See: https://connect.mayoclinic.org/discussion/tymlos-lower-dosage-did-it-improve-your-osteoporosis/

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@shar1234

I just called the manufacturer of Tymlos and they told me that the pen is set to only work at 80mcg and cannot be lowered. Does anyone know if this information is accurate?

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I started at 2 clicks, which is 20 mcg, and gradually inctreased. I am at 6 clicks now and tomorrow will bump it up to 7 clicks. It works just fine. As I understand it, Forteo is the one that cannot do partial dosing.

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@shar1234

I just called the manufacturer of Tymlos and they told me that the pen is set to only work at 80mcg and cannot be lowered. Does anyone know if this information is accurate?

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Yeah, same as the other responses. I've had to use the pen on lowered doses when my shipment was delayed. The pen worked fine and I felt the same side effects, tho milder 🙂 Just dial it to where you want it. In my initial dealings with the Tymlos nurses I was told that the research done on its effectiveness was only done at 80mcg, and only for 18 mos for men and 24 for women, and that any other dose or treatment length was not recommended because they couldn't vouch for the med's effectiveness. Perhaps that's what they were referring to telling you to only use 80 mcg. ?

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@shar1234

I just called the manufacturer of Tymlos and they told me that the pen is set to only work at 80mcg and cannot be lowered. Does anyone know if this information is accurate?

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shar 1234, the Tymlos pen is set at 80mcg. It can be lowered. And it has been effective at lower doses. Some physicians encourage starting at a lower dose. Some physicians are opposed ( I'd say forbid, but they don't have complete control over their thinking patients.)
Calling the manufacturer connects you with a clerk.
I think that listening for clicks and lowering the dose is a patient (real world) generated option.
80mcg of Tymlos is overload for some of us. Windyshores posted good gains at reduced doses. But she couldn't tolerate the 80.

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@daisylou

I started at 2 clicks, which is 20 mcg, and gradually inctreased. I am at 6 clicks now and tomorrow will bump it up to 7 clicks. It works just fine. As I understand it, Forteo is the one that cannot do partial dosing.

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daisylou, you have it right about the Forteo pen. You could take a double shot of Forteo but you'd have to inject twice for half of the 80mcg Tymlos dose.

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@gently

shar 1234, the Tymlos pen is set at 80mcg. It can be lowered. And it has been effective at lower doses. Some physicians encourage starting at a lower dose. Some physicians are opposed ( I'd say forbid, but they don't have complete control over their thinking patients.)
Calling the manufacturer connects you with a clerk.
I think that listening for clicks and lowering the dose is a patient (real world) generated option.
80mcg of Tymlos is overload for some of us. Windyshores posted good gains at reduced doses. But she couldn't tolerate the 80.

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windyshores | @windyshores | Nov 4, 2024
I could not tolerate Forteo at all, and was grateful to get on Tymlos by starting at a low dose after the full dose also caused me problems. I moved the dose up to nearly full dose over a few weeks and my body acclimated. The Tymlos pen has "clicks' that measure doses.

I did 4 months Evenity after two years Tymlos then on to Reclast. At the time, I was told I could do Evenity after Tymlos but not the other way around. Evenity was approved 2019 and I went on meds 2021 so it was new.

I had some fractures and read that Tymlos could be helpful with healing, My spine went from serious osteoporosis to borderline a 19.1% gain, in 18 months on Tymlos.

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@gently

windyshores | @windyshores | Nov 4, 2024
I could not tolerate Forteo at all, and was grateful to get on Tymlos by starting at a low dose after the full dose also caused me problems. I moved the dose up to nearly full dose over a few weeks and my body acclimated. The Tymlos pen has "clicks' that measure doses.

I did 4 months Evenity after two years Tymlos then on to Reclast. At the time, I was told I could do Evenity after Tymlos but not the other way around. Evenity was approved 2019 and I went on meds 2021 so it was new.

I had some fractures and read that Tymlos could be helpful with healing, My spine went from serious osteoporosis to borderline a 19.1% gain, in 18 months on Tymlos.

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I would so appreciate your response to these questions if your schedule permits:
1. Did you take Tymlos in the morning or at bedtime?
2. Did you experience nausea or vertigo?
3. Did you experience a decrease in blood pressure after injecting that made standing risky?

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@windyshores

@ferrer1105 Tymlos is not the newest on the market. Evenity is the newest.

I have been on Tymlos for almost two years. I have had excellent gains and went from severe osteoporosis on the DEXA to borderline. Tymlos builds quality bone and helps with healing, according to my docs.

I am sensitive to meds and started Tymlos at a lower dose and ramped up. The pen has "clicks" to measure out the dose. I did 6-7 clicks for a year and a half and have been doing 7 or 8 clicks now- mostly a full dose, finally.

With bone scores that were low and several spinal fractures, I was willing to endure side effects but it hasn't been too bad over time. I have found the side effects ease up so if you have some, try to keep going. I do it in the morning and try to get up and out because activity helps me with side effects. Everyone is different. I also hydrate.

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I would so appreciate your response to these questions if your schedule permits:
Did you experience nausea or vertigo?
Did you experience a decrease in blood pressure after injecting that made standing risky?

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@daisylou

I started at 2 clicks, which is 20 mcg, and gradually inctreased. I am at 6 clicks now and tomorrow will bump it up to 7 clicks. It works just fine. As I understand it, Forteo is the one that cannot do partial dosing.

Jump to this post

I would so appreciate your response to these questions if your schedule permits:
1. Did you take Tymlos in the morning or at bedtime?
2. Did you experience nausea or vertigo?
3. Did you experience a decrease in blood pressure after injecting that made standing risky?
4. How long did it take you to get to 6 clicks from 2 clicks? And did your doctor object to that?

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