More Tymlos Titration Questions

Posted by ccps101 @ccps101, Feb 1 5:06pm

So just started Tymlos. I’m doing titration. Started with 2, fine. It actually just made me feel like I had an extra dose of my low dose Prednisone and almost exactly same side “effects”, which are not much—for me, just like having an espresso or something. Pred jump starts and this just felt the same. Actually feel like I also got an extra dose of anti-inflammatory bang from it which was great!
So I do NOT want to rush going up, but obviously want to continue to add. How fast did you all go up? I’m inclined to try 3 clicks tomorrow but by the same token do not want to go from the great experience I had today and letting my body adjust (not unlike Pred).
Experiences?
TIA

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Profile picture for beachesanddreams @beachesanddreams

@truong62 Do you have the pen yet? I spoke to a patient representative for Tymlos two weeks ago and she told me the pen allows for an adjustable dose.

To be clear, I ordered it last week but haven’t received it yet. That’s why I asked if you have it yet, because I don’t at the moment.

I just watched a video on the Tymlos website, and the pen appears to allow for an adjustable dose.

I don’t know if this helps, but you can visit the Tymlos website to see for yourself.

Wishing you good luck and strong bones!

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@beachesanddreams Thank you all for your responses. I watched all of these and taking injection now.I’m working closely with my endocrinologist and the Tymlos educator, and I encourage everyone to keep seeking guidance from your doctors too.
I’m sharing my experience, Tymlos side effects to see if anyone else has gone through similar side effects.
so we can support one another
I know I need this medicine, and I’m doing my best to work through the side effects with patience and hope.
Thank you for your wishes Let’s continue to lift each other up. We will get through this together with love and courage. ❤️

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Profile picture for Tt62 @truong62

@beachesanddreams Thank you all for your responses. I watched all of these and taking injection now.I’m working closely with my endocrinologist and the Tymlos educator, and I encourage everyone to keep seeking guidance from your doctors too.
I’m sharing my experience, Tymlos side effects to see if anyone else has gone through similar side effects.
so we can support one another
I know I need this medicine, and I’m doing my best to work through the side effects with patience and hope.
Thank you for your wishes Let’s continue to lift each other up. We will get through this together with love and courage. ❤️

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@truong62 Keeping good thoughts for you as you begin, and I’m going to borrow some of that strength in your desire to work with the medicine as you navigate the first few weeks.

“ We will get through this together with love and courage.” I Love this! 💐

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Profile picture for beachesanddreams @beachesanddreams

@truong62 Keeping good thoughts for you as you begin, and I’m going to borrow some of that strength in your desire to work with the medicine as you navigate the first few weeks.

“ We will get through this together with love and courage.” I Love this! 💐

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@beachesanddreams
Thanks for your support.
Today is my third time restarting Tymlos at the full 80 mcg dose after 9 days to tule out the side effects. My doctor asked me to take it every other day starting last Friday, then switch to taking it every morning. The nighttime internal heat is still difficult, but I’m trying to manage it.

I spoke with the Tymlos pharmacist, and he also said this heat isn’t a known side effect. My endocrinologist recommended that I see my GYN, so I’ll follow up there. I’m 64 and wondering if this could be hormone‑related. My thyroid labs were normal, and I had a thyroid ultrasound today—waiting for the results.

The heat isn’t unbearable, and if the benefits of Tymlos are significant, I want to keep trying. The pharmacist explained that each pen has only one dose (80 mcg), and once opened, it expires in 30 days. So even if I use less, I still have to throw it away after 30 days. I already had to discard half a pen after stopping for 9 days, which feels like such a waste—especially at $6,500 per pen.

Both the pharmacist and my endocrinologist say the heat isn’t from Tymlos and encouraged me to continue, so I’m doing my best to trust their guidance. I’m not someone who likes taking medication—I rarely even take cold medicine. I usually only take multivitamins, vitamin D, and low dose of losartan.I tried many alternatives for this Osteoporosis before this, but now I need to take further action.

Let’s keep supporting each other. Staying positive helps, and knowing we’re not alone makes a big difference. I believe you can do this too. It’s not easy, but if the benefits are real, we’ll find ways to handle the hard parts. I’ll update you when I’m back on daily dosing.

REPLY
Profile picture for Tt62 @truong62

@beachesanddreams
Thanks for your support.
Today is my third time restarting Tymlos at the full 80 mcg dose after 9 days to tule out the side effects. My doctor asked me to take it every other day starting last Friday, then switch to taking it every morning. The nighttime internal heat is still difficult, but I’m trying to manage it.

I spoke with the Tymlos pharmacist, and he also said this heat isn’t a known side effect. My endocrinologist recommended that I see my GYN, so I’ll follow up there. I’m 64 and wondering if this could be hormone‑related. My thyroid labs were normal, and I had a thyroid ultrasound today—waiting for the results.

The heat isn’t unbearable, and if the benefits of Tymlos are significant, I want to keep trying. The pharmacist explained that each pen has only one dose (80 mcg), and once opened, it expires in 30 days. So even if I use less, I still have to throw it away after 30 days. I already had to discard half a pen after stopping for 9 days, which feels like such a waste—especially at $6,500 per pen.

Both the pharmacist and my endocrinologist say the heat isn’t from Tymlos and encouraged me to continue, so I’m doing my best to trust their guidance. I’m not someone who likes taking medication—I rarely even take cold medicine. I usually only take multivitamins, vitamin D, and low dose of losartan.I tried many alternatives for this Osteoporosis before this, but now I need to take further action.

Let’s keep supporting each other. Staying positive helps, and knowing we’re not alone makes a big difference. I believe you can do this too. It’s not easy, but if the benefits are real, we’ll find ways to handle the hard parts. I’ll update you when I’m back on daily dosing.

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@truong62 I'm sorry to hear you are having issues getting started with Tymlos. I am 12 months in...have had great results but also had to manage side effects. Just a couple of thoughts that might help... if you keep the pens in the fridge they will last beyond the 30 days. The 30 day clock starts ticking when you bring them to room temp. There are way more 80 mcg daily doses in those pens than 30 days worth, so if you are paying a ton for them this is something to consider! Feel free to check with Tymlos directly on this. Of course they want you to buy one for each every 30 day period, but technically the pens last longer if kept in the fridge!
Make sure you are hydrated when you do the shot? Sounds like you are doing it right before bed. I do that too and find it helps me get past the head rush and any weirdness....just sleep it off! I feel like my blood is really pumping after the shot but feel it more in my head...can hear my heart beat all over! I did the full 80 mcg dose for a good 6-7 months before the muscle weakness and random bone pain got to be too much for me. By then my BTM's (bone turnover markers CTX and P1NP) were great, so I was able to drop down to a lesser dose of 60 mcg's with my doc's OK. My markers stayed high and I was able to get to where I am now with less side effects. I hate to see folks bailing when there are such benefits to be had! My spine density is up 64% and my hips are all up between 14-26% in 12 months. It's an amazing drug and I too hate taking anything pharma but can't argue with these results. Best of luck to you and courage!! (Oh and definitely let me put in a plug for HRT here! Started patch estradiol + pill progesterone 6 mos before the Tymlos and I can't help but think it's partially responsible for my results.) Hang in there!

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Profile picture for michieg @michieg

@truong62 I'm sorry to hear you are having issues getting started with Tymlos. I am 12 months in...have had great results but also had to manage side effects. Just a couple of thoughts that might help... if you keep the pens in the fridge they will last beyond the 30 days. The 30 day clock starts ticking when you bring them to room temp. There are way more 80 mcg daily doses in those pens than 30 days worth, so if you are paying a ton for them this is something to consider! Feel free to check with Tymlos directly on this. Of course they want you to buy one for each every 30 day period, but technically the pens last longer if kept in the fridge!
Make sure you are hydrated when you do the shot? Sounds like you are doing it right before bed. I do that too and find it helps me get past the head rush and any weirdness....just sleep it off! I feel like my blood is really pumping after the shot but feel it more in my head...can hear my heart beat all over! I did the full 80 mcg dose for a good 6-7 months before the muscle weakness and random bone pain got to be too much for me. By then my BTM's (bone turnover markers CTX and P1NP) were great, so I was able to drop down to a lesser dose of 60 mcg's with my doc's OK. My markers stayed high and I was able to get to where I am now with less side effects. I hate to see folks bailing when there are such benefits to be had! My spine density is up 64% and my hips are all up between 14-26% in 12 months. It's an amazing drug and I too hate taking anything pharma but can't argue with these results. Best of luck to you and courage!! (Oh and definitely let me put in a plug for HRT here! Started patch estradiol + pill progesterone 6 mos before the Tymlos and I can't help but think it's partially responsible for my results.) Hang in there!

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@michieg Wonderful News about your bone gains!

Question: if you choose to refrigerate the Tymlos, do you have to bring it to room temp before injecting, or can you inject cold?

REPLY
Profile picture for Tt62 @truong62

@beachesanddreams
Thanks for your support.
Today is my third time restarting Tymlos at the full 80 mcg dose after 9 days to tule out the side effects. My doctor asked me to take it every other day starting last Friday, then switch to taking it every morning. The nighttime internal heat is still difficult, but I’m trying to manage it.

I spoke with the Tymlos pharmacist, and he also said this heat isn’t a known side effect. My endocrinologist recommended that I see my GYN, so I’ll follow up there. I’m 64 and wondering if this could be hormone‑related. My thyroid labs were normal, and I had a thyroid ultrasound today—waiting for the results.

The heat isn’t unbearable, and if the benefits of Tymlos are significant, I want to keep trying. The pharmacist explained that each pen has only one dose (80 mcg), and once opened, it expires in 30 days. So even if I use less, I still have to throw it away after 30 days. I already had to discard half a pen after stopping for 9 days, which feels like such a waste—especially at $6,500 per pen.

Both the pharmacist and my endocrinologist say the heat isn’t from Tymlos and encouraged me to continue, so I’m doing my best to trust their guidance. I’m not someone who likes taking medication—I rarely even take cold medicine. I usually only take multivitamins, vitamin D, and low dose of losartan.I tried many alternatives for this Osteoporosis before this, but now I need to take further action.

Let’s keep supporting each other. Staying positive helps, and knowing we’re not alone makes a big difference. I believe you can do this too. It’s not easy, but if the benefits are real, we’ll find ways to handle the hard parts. I’ll update you when I’m back on daily dosing.

Jump to this post

@truong62
Wonderful post ,I spoke to a tymlos educator on a call today. Starting my first dose tonight but going to only do 2 or 4 clicks not full 80 dose. Too fearful of side effects. I did read somewhere about heat flashes but its likely from another post.
Good luck to all of us!

REPLY
Profile picture for beachesanddreams @beachesanddreams

@michieg Wonderful News about your bone gains!

Question: if you choose to refrigerate the Tymlos, do you have to bring it to room temp before injecting, or can you inject cold?

Jump to this post

@beachesanddreams yes get it out of fridge 1/2 hour before taking. Otherwise you may get some stinging.

REPLY
Profile picture for beachesanddreams @beachesanddreams

@michieg Wonderful News about your bone gains!

Question: if you choose to refrigerate the Tymlos, do you have to bring it to room temp before injecting, or can you inject cold?

Jump to this post

@beachesanddreams You can inject cold.
Note that once you have brought it to room temperature the 30 day clock starts ticking on it's viability. If you have good insurance coverage and are not worried about trying to stretch the pens then it's probably a little more comfortable injecting at room temp, but honestly it's over so fast it's no big deal!

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Profile picture for ccps101 @ccps101

@beachesanddreams yes get it out of fridge 1/2 hour before taking. Otherwise you may get some stinging.

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@ccps101 Except once you have brought it to room temp there is no point in re-refridgerating. The 30 day clock is ticking.... it keeps 30 days at room temp.

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Profile picture for michieg @michieg

@beachesanddreams You can inject cold.
Note that once you have brought it to room temperature the 30 day clock starts ticking on it's viability. If you have good insurance coverage and are not worried about trying to stretch the pens then it's probably a little more comfortable injecting at room temp, but honestly it's over so fast it's no big deal!

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@michieg Thank you for your reply!

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