Dosage Adjustments On Tymlos Pen

Posted by julieann9 @julieann9, Apr 16, 2023

I recently started using the Tymlos pen. I am on the beginning of
the second pen. I have been on the full dosage and the
side effects have been horrendous. I am 5 foot, 1 inch and
weigh 110 pounds. I asked my doc and the pharmacist at the
specialty pharmacy about starting at a lower dose. They both said
the pen only administers the full dose.
Now I am reading that people have adjusted the dose on the
Tymlos pen by using clicks. Can someone please explain to me
how to do this. Your help is much appreciated. Thanks.

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@beanieone

Hi @windyshores

When I was using Tymlos, the injection nurse at the pharmacy told me to throw the pen away after 30 days, even if there was med remaining in the pen. In checking the Radius website, it states that the pen “expires” and should be discarded after 30 days as well. I don’t know if the reason behind it is to make sure they dispense the max number of pens during treatment ($$$$$) or if the meds become less effective after that timeframe.

Anyone have any thoughts or info to share?

Hope everyone is cool under this hot July sun. Cheers!

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My doctor, the company and the pharmacist all told me that it is fine to use it past 30 days if it is refrigerated the whole time.

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@joniterry

Hi I started Tymlos today I used 4 clicks because I am a small person and want to step into possible side effects slowly. I dis have Hr of 106 and pain over my sacrum for maybe 10 min other than that I was really tired later on in the day...anyone have this? I would rather dose at bedtime could I do another 4 clicks tonight to change over???

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I have been using Tymlos for almost 3 weeks. I didn't know that I could lower the dose and started with 80 and my heart went wild, pounding and pressure/pain. This forum suggested I go to 40 (4 clicks) and I have been doing that but my heart is still thumping and irratic for about an hour after taking it. I am currently wearing a holter monitor and will see what cardiology has to say today. I would not increase to 6 yet if I were you. Stay on 4 clicks (40 mcg) for several days to see if the effect on your heart lessons. Good luck.

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@beanieone

Hi @windyshores

When I was using Tymlos, the injection nurse at the pharmacy told me to throw the pen away after 30 days, even if there was med remaining in the pen. In checking the Radius website, it states that the pen “expires” and should be discarded after 30 days as well. I don’t know if the reason behind it is to make sure they dispense the max number of pens during treatment ($$$$$) or if the meds become less effective after that timeframe.

Anyone have any thoughts or info to share?

Hope everyone is cool under this hot July sun. Cheers!

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Beanieone,
I don't think the pens last much longer than 30 days. I was on 2 clicks and used the pen for 60 days. When I started the next pen all of my side effects came back, so I figured it was stronger. I always refrigerate. Now I'm on 4 clicks and only let it go afew days or a week past 30 days, and I can't tell any difference with the new pen.

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@zygote maybe you could go down to two clicks for a week or two and move up more slowly.

I used pens for 5 weeks. With the approval of doc, and Radius. But only if refrigerated and I kept it cold when I visited kids with cold packs and cooler (wrapped the box in a hand towel).

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@windyshores

The pen has 8 clicks. Move the dose slowly and you will feel and hear the clicks. You can start as low as two clicks. and my doc was happy with 6 longer term (though I did get to 7 and even 8). Side effects tend to ease at each level, after a week or two. Tymlos has made me a lot stronger so it is worth it to try and stick with it.

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Hi,
I have really appreciated the info about starting with a lower dose, letting your body adjust. I did my first dose today. I believe I was one click below the full 80mg dose. But I didn’t feel anything. No dizziness, no rapid heartbeat, no headache or nausea. I will try again tomorrow at the same dose.

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@fresian1

Hi,
I have really appreciated the info about starting with a lower dose, letting your body adjust. I did my first dose today. I believe I was one click below the full 80mg dose. But I didn’t feel anything. No dizziness, no rapid heartbeat, no headache or nausea. I will try again tomorrow at the same dose.

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@fresuab1 if you have no reaction to 70mcg that is great! I had 20% gain in my spine on that dose. You will probably be able to do 80 anyway.

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@windyshores

@fresuab1 if you have no reaction to 70mcg that is great! I had 20% gain in my spine on that dose. You will probably be able to do 80 anyway.

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Well, I may not have judged the clicks correctly. I will go more slowly next time. I went all the way to 80 and then to what I thought was one click down from there.

I also requested the extra fine needles based on advice I found here. I hardly felt the injection, which was nice.

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@windyshores

@diane0202 as you turn the end of the pen, the pen actually makes little clicking noises every 10mcg. The pen doesn't have any window showing dose. Full dose is 8 clicks of the pen, or 80mcg.

I don't think you get much at all with once click. I started with two but understand if people are nervous, starting with one is reassuring. It may not be necessary to wait a whole week between dose changes at first but after I got to a half dose, I did slow down my ramping up.

I believe therapeutic levels start at 4 clicks. Or so my doc said. As I wrote before, there WILL be some side effects for many but for many of us they fade in time.

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I just started Tymlos a week ago and this is the first I've heard of adjusting the dose with "clicks" on the pen. Are there any instructions from Tymlos?

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no, @hudsonlady, you have to get the instructions here from @windyshores.

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@hudsonlady

I just started Tymlos a week ago and this is the first I've heard of adjusting the dose with "clicks" on the pen. Are there any instructions from Tymlos?

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@hudsonlady many people don't need to start at a low dose of Tymlos. It's fine to start with a full dose or half dose and see how you do. Ramping up with dose adjustments may not eliminate side effects either: for me starting low and moving up on dose made it possible/tolerable to do.

This is not a studied protocol and the company, Radius, is not going to recommend it. Many doctors won't either. I think I brought the idea to the forum a few years back but never intended everyone to do it or to suggest that folks should stay at a lower dose to avoid all side effects.

My doctor has patients do this when necessary rather than quitting- which I almost did! He watched me try to get on various meds over 16 years and was happy that anything helped!

As for instructions: it is very individual. I tried a half dose and has trouble. I went down to two clicks and maybe every week or so went up a click. I ended up at 7 clicks most of the time, and 6 if I had something important to do. Oddly I could never tolerate 8 clicks (I did that maybe three times total in two years).

ps We are all increasing Radius' business since some of us would have quit!!!!

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