Tymlos Titration Scedule?

Posted by bharris202 @bharris202, 5 days ago

I’m newly diagnosed with severe osteoporosis. My doctor and insurance have settled on Tymlos as the treatment. I’ve had some past drug sensitivities, even drug allergies, so I’m intrigued by the fact that others have posted here about titrating on Tymlos. My doctor has said there is NO titration for Tymlos and that the pen can only deliver the 80mcg dosage. Can those of you that have titrated share the titration schedule you have used and how the pen is adjusted to deliver smaller dosages?

Thank you.

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Your doctor is wrong. The Tymlos pen clicks when you turn the plunger. If you click it eight times, "80" appears in the little window, and that's the max dose: 80 mcg. However, each click counts as 10 mcg. Click four times, you have 40 mcg. Think about it: why would they even design the pen to be clicked in this manner if they didn't anticipate that lower doses would be needed? The Forteo pen, for example, only has one dose which can't be adjusted.

It's a trial-and-error thing because there are no studies on it. You can start really low, like 2-3 clicks. If that works well, maybe go up one click the next day, and so on. Some people will try to go up one click a week. Some find that once they reach a certain level, the side effects are too much and that's their limit.

Also keep in mind that mild side effects are normal, and sometimes go away after a few weeks of use. The goal isn't to use the pen and feel absolutely nothing - it's to use the pen and have side effects that are mild and manageable.

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I just started Tymlos this week. I have started with 2 clicks. I did that for 2 days and today I am going to go up to 3 and see how that goes. I think I will stay at each dose for a couple of days at least to make sure I don't have bad side effects before I go up. This is my own schedule going at my comfort level. My endo said that she has other patients starting on lower dose. Not sure what happens if you can't reach 80 mcg but I figure I will do the best I can. Some gain is better than none.

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Yes, you can titrate. I started off with the whole dose and was getting terrible side effects. I read on this site that you could reduce it. I’ve been taking a half dose for a year and a half
just do as many clicks as you want .
I do four . Just had my two-year DEXA scan and great improvement. Think it should be based on bodyweight I only weigh 107.

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Profile picture for tymlos666 @tymlos666

Yes, you can titrate. I started off with the whole dose and was getting terrible side effects. I read on this site that you could reduce it. I’ve been taking a half dose for a year and a half
just do as many clicks as you want .
I do four . Just had my two-year DEXA scan and great improvement. Think it should be based on bodyweight I only weigh 107.

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@tymlos666 You know, that's always something I wondered about. I (male) am 175 pounds. You are nearly 70 pounds lighter, and I have more blood volume than you. It would seem odd that you and I would both take the same dose, right?

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How long did you do the full dose of 8 clicks before you went down to 4? It’s good to hear that you got great improvement with doing just 4 clicks and for a year and a half. Did you have any side effects with the 4 clicks?

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After my first injection of Tymlos which was a full dosage of 8 clicks (80mcg), I had a very strong reaction (extremely intense back spasms). I contacted my endo immediately, who told me to stay hydrated and that for two weeks I should take calcium supplements (Citracal) and double my vitamin D. She also told me I could titrate as long as I could get to full dosage. (I also asked some friends who are doctors who said titrating made sense, considering I weigh 107 lbs. They also stressed I should aim to get to full dosage.)
The second day I drank massive amounts of water, and dropped down to two clicks. The pain was much less. I spent from two to four days on each level, until I reached 8 clicks or full dosage. My goal was never no side effects, just mild side effects that i could ignore, like 2 second, light spasms. I still get those occasionally - once a week at most, especially if I am not well hydrated. For me, hydration has been key. Also walking around after the injection. I've been on it for four months now, about three at full dosage.

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Profile picture for miya19 @miya19

After my first injection of Tymlos which was a full dosage of 8 clicks (80mcg), I had a very strong reaction (extremely intense back spasms). I contacted my endo immediately, who told me to stay hydrated and that for two weeks I should take calcium supplements (Citracal) and double my vitamin D. She also told me I could titrate as long as I could get to full dosage. (I also asked some friends who are doctors who said titrating made sense, considering I weigh 107 lbs. They also stressed I should aim to get to full dosage.)
The second day I drank massive amounts of water, and dropped down to two clicks. The pain was much less. I spent from two to four days on each level, until I reached 8 clicks or full dosage. My goal was never no side effects, just mild side effects that i could ignore, like 2 second, light spasms. I still get those occasionally - once a week at most, especially if I am not well hydrated. For me, hydration has been key. Also walking around after the injection. I've been on it for four months now, about three at full dosage.

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@miya19 Thank you, thank you! I already hydrate tons because I have neurocardiogenic syncope, so hydration will be easy.

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Profile picture for miya19 @miya19

After my first injection of Tymlos which was a full dosage of 8 clicks (80mcg), I had a very strong reaction (extremely intense back spasms). I contacted my endo immediately, who told me to stay hydrated and that for two weeks I should take calcium supplements (Citracal) and double my vitamin D. She also told me I could titrate as long as I could get to full dosage. (I also asked some friends who are doctors who said titrating made sense, considering I weigh 107 lbs. They also stressed I should aim to get to full dosage.)
The second day I drank massive amounts of water, and dropped down to two clicks. The pain was much less. I spent from two to four days on each level, until I reached 8 clicks or full dosage. My goal was never no side effects, just mild side effects that i could ignore, like 2 second, light spasms. I still get those occasionally - once a week at most, especially if I am not well hydrated. For me, hydration has been key. Also walking around after the injection. I've been on it for four months now, about three at full dosage.

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@miya19 I'm waiting for my in-the-office appointment with a rheumatologist. Waiting for an endocrinologist or rheumatologist consultation is long. At my 1st video visit rhematologist recommended Evenity without knowing my medical history, but I worry that I am not the best candidate for anabolics (Evenity, Tymlos, or Forteo) with my hypertension and coronary artery plaques. Does anyone have a similar situation or experience?

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Profile picture for miya19 @miya19

After my first injection of Tymlos which was a full dosage of 8 clicks (80mcg), I had a very strong reaction (extremely intense back spasms). I contacted my endo immediately, who told me to stay hydrated and that for two weeks I should take calcium supplements (Citracal) and double my vitamin D. She also told me I could titrate as long as I could get to full dosage. (I also asked some friends who are doctors who said titrating made sense, considering I weigh 107 lbs. They also stressed I should aim to get to full dosage.)
The second day I drank massive amounts of water, and dropped down to two clicks. The pain was much less. I spent from two to four days on each level, until I reached 8 clicks or full dosage. My goal was never no side effects, just mild side effects that i could ignore, like 2 second, light spasms. I still get those occasionally - once a week at most, especially if I am not well hydrated. For me, hydration has been key. Also walking around after the injection. I've been on it for four months now, about three at full dosage.

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@miya19 I had similar reaction with my first full dosage - serious neck/shoulder tightness on the right side. I laid down for like an hour. That was the worst and last serious episode with the full dose. As a precaution I stay seated for like 30 minutes after each (full dose) injection.

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Profile picture for md79 @md79

@miya19 I'm waiting for my in-the-office appointment with a rheumatologist. Waiting for an endocrinologist or rheumatologist consultation is long. At my 1st video visit rhematologist recommended Evenity without knowing my medical history, but I worry that I am not the best candidate for anabolics (Evenity, Tymlos, or Forteo) with my hypertension and coronary artery plaques. Does anyone have a similar situation or experience?

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@md79 I have artery plaque and took Tymlos. Also, a Tymlos side effect is a temporary drop in blood pressure. I would think that your cardio issues shouldn't be an issue. Evenity is a different story since it has a specific warning for certain cardio patients.

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