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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It's a little tricky at first because only the max dose, 80 mcg, appears in the little window. You just have to know that each click down represents 10 mcg less: 70, 60, 50, etc.

I've been at 80 from the start, but I'm a 175-pound 5-11" male, so maybe it's easier for my body to tolerate it. I still feel a little "something" for around 30 minutes, even after eight months, but it's never gotten any worse and it always goes away.

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Has anyone had horrible back pain as a side effect? In the muscle, not bone. I took 2 full doses, dropped down to 4 clicks for 5 days but it only got worse. My next move is to pause for a few days to see if it goes away and then restart to see if the tymlos is the cause. I am also small at 5'2" 105 lbs

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@nwyatt

Has anyone had horrible back pain as a side effect? In the muscle, not bone. I took 2 full doses, dropped down to 4 clicks for 5 days but it only got worse. My next move is to pause for a few days to see if it goes away and then restart to see if the tymlos is the cause. I am also small at 5'2" 105 lbs

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I have read that others have experienced back pain. After your pause, maybe try a very low dose, like three clicks, for a few days and see what happens. Then move up a click.

Some people have better luck taking the dose in the morning and then walking around, vs. at night before bed.

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@nwyatt you can even go down to 2 clicks and move up. I could not tolerate 4 clicks but succeeded in getting to 7 by titrating. I speculated that some bone pain is from bone growing. That could also set off muscles, at least in my case. In my experience my body did get used to Tymlos but had to have a handshake first with two clicks! I also switched to morning, hydrated, and got going. My first reaction to low bp was to stay in bed but I discovered that activity raised it. We are all different but the basic message is to try to make it work for you.

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@windyshores

@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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I started out on 2 clicks, then gradually went up and within 6 weeks am up to full dose. But I do it in the morning, with my coffee, and no side effects really at all. I would suggest morning for anyone who is having a faster heartbeat with it and then trying to sleep. It is barely noticeable to me, I’m one of the lucky ones I guess!

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@windyshores

@nwyatt you can even go down to 2 clicks and move up. I could not tolerate 4 clicks but succeeded in getting to 7 by titrating. I speculated that some bone pain is from bone growing. That could also set off muscles, at least in my case. In my experience my body did get used to Tymlos but had to have a handshake first with two clicks! I also switched to morning, hydrated, and got going. My first reaction to low bp was to stay in bed but I discovered that activity raised it. We are all different but the basic message is to try to make it work for you.

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I have been doing it in the morning before breakfast and a big glass of water. How long do you think I should pause before trying again?

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@njx58

I have read that others have experienced back pain. After your pause, maybe try a very low dose, like three clicks, for a few days and see what happens. Then move up a click.

Some people have better luck taking the dose in the morning and then walking around, vs. at night before bed.

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Thanks and I do take it in the morning. Any suggestions on how long to pause?

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@nwyatt

I have been doing it in the morning before breakfast and a big glass of water. How long do you think I should pause before trying again?

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@nwyatt Not long. Tymlos leaves the body in hours!

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Thanks, Windshores! I haven't had bad side effects with 80 so just wondered what the clicks were. If I have any effects, I guess I can go back down,

Re: refrigeration. Neither my doc nor the instructions I got mentioned refrigeration. Should I be?

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@hudsonlady

Thanks, Windshores! I haven't had bad side effects with 80 so just wondered what the clicks were. If I have any effects, I guess I can go back down,

Re: refrigeration. Neither my doc nor the instructions I got mentioned refrigeration. Should I be?

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@hudsonlady if you are doing full dose there is no need for refrigeration unless it is hot where you are. Avoid leaving it in a hot car etc! I would still keep it cool traveling, personally, but it is designed to be okay at room temperature for 30 days.

I am another patient so if you want professional advice a pharmacist or Radius can help.

If you can tolerate the full dose that is great news and it seems unlikely that that will change. Tymlos is a great medication and hope you have dramatic gains like I did!

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