1. < Osteoporosis & Bone Health

Have you used alternative dosages for Tymlos or Forteo?

Posted by Laurapearl @laurapearl, Jul 7, 2019

Hi everyone: I’m in my fourth month of Tymlos injections. I’ve noticed from time to time that people mentioned using a variation of the usual dosage of Tymlos or Forteo. For example, instead of one full injection every night, they were injecting every other night, or they were using a reduced amount of the medication in each injection. If you have used an alternative dosage, 1) what was it, 2) why did your doctor suggest it, and 3) how has it worked for you? Thanks!

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windyshores | @windyshores | Oct 11, 2022
In reply to @bayhorse "This is very interesting to me, and makes me think I need a new doctor. I..." + (show)
@bayhorse

This is very interesting to me, and makes me think I need a new doctor. I am only 5' tall, and weigh about 89 pounds, and neither of my physicians have suggested that the full Tymlos dose might be too much for me. But after months of making myself sick -- nausea, headache, palpitations -- on this drug, I am definitely going to go to a reduced dose. BTW, rheumatologists have been directing my care. Would an endocrinologist be more knowledgeable?

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I didn't have a single doctor suggest this to me, but my doc (endo) was totally on board and happy with whatever I could do.

I also called the company and told them they might be losing customers because some people could tolerate the drug by taking a lower dose and/or ramping up. People quit when they have options to continue. I am so much stronger after a year on this and I almost quit.

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etartaglione | @etartaglione | Oct 12, 2022

I have been using Forteo for 11 months no problems and taking it every day 1 shot?????

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JK | @contentandwell | Oct 13, 2022
In reply to @bayhorse "This is very interesting to me, and makes me think I need a new doctor. I..." + (show)
@bayhorse

This is very interesting to me, and makes me think I need a new doctor. I am only 5' tall, and weigh about 89 pounds, and neither of my physicians have suggested that the full Tymlos dose might be too much for me. But after months of making myself sick -- nausea, headache, palpitations -- on this drug, I am definitely going to go to a reduced dose. BTW, rheumatologists have been directing my care. Would an endocrinologist be more knowledgeable?

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@bayhorse I was told either a rheumatologist or an endocrinologist. I think there may be a slight difference though. My PCP directed me to a rheumatologist but I suspect that was because he thought that particular doctor was the best in the area for treating osteoporosis. I chose to go beyond my local area for treatment and chose the doctor who was most appealing to me. She happened to be an endocrinologist.

@windyshores Who did you actually call? I had a question and the pharmacist didn't know the answer so I called Radius and was told they only market the drug, they can't give any answers about it! It left me sort of high and dry.
JK

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2 replies
bayhorse | @bayhorse | Oct 13, 2022
In reply to @contentandwell "@bayhorse I was told either a rheumatologist or an endocrinologist. I think there may be a..." + (show)
@contentandwell

@bayhorse I was told either a rheumatologist or an endocrinologist. I think there may be a slight difference though. My PCP directed me to a rheumatologist but I suspect that was because he thought that particular doctor was the best in the area for treating osteoporosis. I chose to go beyond my local area for treatment and chose the doctor who was most appealing to me. She happened to be an endocrinologist.

@windyshores Who did you actually call? I had a question and the pharmacist didn't know the answer so I called Radius and was told they only market the drug, they can't give any answers about it! It left me sort of high and dry.
JK

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Thanks to both of you for the information!

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windyshores | @windyshores | Oct 13, 2022
In reply to @contentandwell "@bayhorse I was told either a rheumatologist or an endocrinologist. I think there may be a..." + (show)
@contentandwell

@bayhorse I was told either a rheumatologist or an endocrinologist. I think there may be a slight difference though. My PCP directed me to a rheumatologist but I suspect that was because he thought that particular doctor was the best in the area for treating osteoporosis. I chose to go beyond my local area for treatment and chose the doctor who was most appealing to me. She happened to be an endocrinologist.

@windyshores Who did you actually call? I had a question and the pharmacist didn't know the answer so I called Radius and was told they only market the drug, they can't give any answers about it! It left me sort of high and dry.
JK

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@contentandwell I called my representative at Tymlos Together. I didn't have a question and I was not seeking advice. I just told them that I could not tolerate a full dose but had succeeded in starting at a low dose and ramping up, and that they could retain more patients if this info was given to doctors.

Of course they are limited by protocols done in studies, as are the docs and pharmacists. (My doc did approve heartily of what I was doing, but did not suggest it....)

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bayhorse | @bayhorse | Oct 14, 2022

Windyshores, did you get any pushback from the Tymlos people about not using up the full pen within 30 days? (Ie., using lower daily dose would make the pen contents last longer than 30 days.) I have heard that you can't trust that the med will be good past 30 days, but my suspicion is that's manufacturer's sales talk, not the truth. Did your doc weigh in on this?

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2 replies
windyshores | @windyshores | Oct 14, 2022
In reply to @bayhorse "Windyshores, did you get any pushback from the Tymlos people about not using up the full..." + (show)
@bayhorse

Windyshores, did you get any pushback from the Tymlos people about not using up the full pen within 30 days? (Ie., using lower daily dose would make the pen contents last longer than 30 days.) I have heard that you can't trust that the med will be good past 30 days, but my suspicion is that's manufacturer's sales talk, not the truth. Did your doc weigh in on this?

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Again, the company and pharmacy are bound to the conditions of studies. I refrigerate mine and if I travel, pack it with an ice pack wrapped in a hand towel.

My doc logically expected me to use it past 30 days and prescribed extra needles. The doc didn't even raise the issue but seemed to assume.

The pharmacy that Tymlos/Radius uses did not want to give me extra needles because they expect you to discard after 30 days. But they also encourage keeping it at room temperature.

The ONLY reason to keep it at room temperature is to supposedly make shots more comfortable. The idea is that cold medicine hurts. I don't find that to be true.

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janih | @janih | Oct 15, 2022
In reply to @bayhorse "Windyshores, did you get any pushback from the Tymlos people about not using up the full..." + (show)
@bayhorse

Windyshores, did you get any pushback from the Tymlos people about not using up the full pen within 30 days? (Ie., using lower daily dose would make the pen contents last longer than 30 days.) I have heard that you can't trust that the med will be good past 30 days, but my suspicion is that's manufacturer's sales talk, not the truth. Did your doc weigh in on this?

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Hello, I’m new to this group, having started Tymlos in June, with very few noticeable side effects. I too am wondering about the amount of medicine still in the cartridge after 30 days, even after a month of full doses. It seems like such a waste of very expensive medicine! Maybe refrigerating the cartridge throughout the month would preserve the Tylmos so the entire contents could be used safely and effectively? Anyone with insight on this?

OH, just now seeing the recent response about this very thing! Glad to have that input, thank you! I’ll try to get my doc to give me more needles too.

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tricia225 | @tricia225 | Nov 21, 2022
In reply to @windyshores "I have written a lot of posts about my experience with dosing for Tymlos. My first..." + (show)
@windyshores

I have written a lot of posts about my experience with dosing for Tymlos. My first attempt with a full, or even half, dose caused a lot of side effects for me: headache, dizziness, chest pressure, heart palpitations (I landed in the ER with an afib episode which may or may not have been related, since I have had episodes before).

I called Tymlos and their pharmacy NuFactor, and threw out my pens. Then I talked with cardiologists and endocrinologists- two each. I was deciding between Evenity and restarting Tymlos at a lower dose. Since we can take Evenity after Tymlos but not the other way around (to my knowledge and according to my doc, but check this), I chose to try Tymlos again.

The Tymlos pen has 8 clicks. I started at two clicks. I moved up slowly over 2 months, ending with 6 clicks (doc was happy) and after another month or so, to 7 clicks. I have been on 7 clicks for at least 10 months now. For the last few months I have had no side effects- zero. Maybe a little fatigue but hard to tell (taking care of an elderly mother is tiring in and of itself!)

This morning, after all this time, I again tried 8 clicks. Full side effects, chest pressure, heart palpitations, headache, woozy.

I am just hoping that this info that ONE click makes that much difference, might encourage others to play around with dosing.

We can benefit from dosing of 6 or 7 clicks, which according to my doc is a lot better than giving up altogether after sticking with 8.

And if you have side effects at a low dose, wait a week or two and your body will adjust, then go up a click. You will know when you have reached your tolerable effective dose. For me it is still not 8 clicks!

I am very motivated because I fractured. The problem with motivation with osteoporosis is that we don't feel it until we fracture. I wish I could go back and do Tymlos before fracturing, but I did not know the dose was adjustable and Forteo was not tolerable for me (no clicks on that pen). Good luck everyone!

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Thank you!! I started tymlos five days ago and it’s been a nightmare. I was wondering why the doc didn’t suggest calibrating the dose to get used to it. Tonight, I stopped just before the 80 and feel way less side effects, just tired. I’m going to continue at a lower dose (I wasn’t sure how many clicks would get me to full dosage and it seems on my own it’s less than 8?). I’m also thinking of switching to morning. When do you take yours @windyshores? Would also love to know if your doc is near me. I’m in Charleston SC and good doctors are lacking in this area.
So grateful for your post and hope you reverse that bone loss !
Happy Thanksgiving.

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1 reply
windyshores | @windyshores | Nov 21, 2022
In reply to @tricia225 "Thank you!! I started tymlos five days ago and it’s been a nightmare. I was wondering..." + (show)
@tricia225

Thank you!! I started tymlos five days ago and it’s been a nightmare. I was wondering why the doc didn’t suggest calibrating the dose to get used to it. Tonight, I stopped just before the 80 and feel way less side effects, just tired. I’m going to continue at a lower dose (I wasn’t sure how many clicks would get me to full dosage and it seems on my own it’s less than 8?). I’m also thinking of switching to morning. When do you take yours @windyshores? Would also love to know if your doc is near me. I’m in Charleston SC and good doctors are lacking in this area.
So grateful for your post and hope you reverse that bone loss !
Happy Thanksgiving.

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I am so much stronger. My daughter is visiting and keeps remarking on it.

@tricia225 you can start at two clicks and move up. It's fine. Whatever level is comfortable for you.

My doc was fine with 6 clicks as a final dose. I have been doing 7 clicks for almost a year now. I still cannot do a full dose of 8 clicks!

I actually ended up in the ER starting at the full dose. I was determined and talked to my doc who was happy with my plan to ramp up slowly. It worked!

I also called the company to tell them about it because I believe they are losing customers, and patients are losing an opportunity for better health, if everyone is told to start at 8. Why have the clicks in the first place if the dose is not supposed to be adjusted?!

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