1. < Osteoporosis & Bone Health

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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jmla | @jmla | Dec 27, 2023
In reply to @windyshores "I did it! I was having some heart issues last night- very brief tachycardia and maybe..." + (show)
@windyshores

I did it! I was having some heart issues last night- very brief tachycardia and maybe afib- so was extra nervous.

I had a "reaction" (not a side effect) with pretty strong pressure on my chest and wooziness. This has happened before. I am probably sensitive to the polysorbate 20 in the injections. I had the injections in my tummy.

After an hour or so I am fine. Happy I did it! I made an appointment for late January and early March. Onward!

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So glad to hear this, @windyshores!! Hope your results keep going.

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bkb | @bkb | Jan 12 4:00pm
In reply to @jmla "@windyshores Update: I started my second pen this week and went up from 40 to 50mcg...." + (show)
@jmla

@windyshores
Update: I started my second pen this week and went up from 40 to 50mcg. I felt fine and let my doctor know that I had bumped it up a bit. He told me to continue at 50 and try 60 in two weeks. I’m very glad to have increased my dose. Thanks for the encouragement. I hope I see the same gains as you’ve had, although my spine bmd is lower than yours was. Depending on how long my body continues to respond to Tymlos, my doctor has suggested that he may keep me on it beyond 2 years. I very much hope my first blood test shows that it’s working at all. Fingers crossed!

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I thought that Tymlos was limited to two years?

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2 replies
bkb | @bkb | Jan 12 4:02pm

Has anyone takn Tymlos beyond the suggested 2 yr timeframe? If so, how long and hve you had any probems?

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windyshores | @windyshores | Jan 12 6:49pm
In reply to @bkb "I thought that Tymlos was limited to two years?" + (show)
@bkb

I thought that Tymlos was limited to two years?

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@bkb the time limit was lifted on Forteo, and should be lifted soon for Tymlos. Those of us who started at a low dose have trouble determining how long we have been on it! I did Tymlos in June 2021, then restarted at a low dose Oct. 2021. and by Dec. (maybe, can't remember) was on 6 or 7 "clicks" out of 8. I just stopped Tymlos last month, so over 2 years.

One issue it that it tends to stop building bone. For me, tests showed that around 18 months. But it maintains. If I cannot tolerate anything else I may try to stay on it!

@jmla I am not sure if my spine was -3.3 or -3.6, and can't access the scores at the moment. However I have had 7 spinal fractures! I hope you haven't had any!

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2 replies
jmla | @jmla | Jan 17 11:31pm
In reply to @windyshores "@bkb the time limit was lifted on Forteo, and should be lifted soon for Tymlos. Those..." + (show)
@windyshores

@bkb the time limit was lifted on Forteo, and should be lifted soon for Tymlos. Those of us who started at a low dose have trouble determining how long we have been on it! I did Tymlos in June 2021, then restarted at a low dose Oct. 2021. and by Dec. (maybe, can't remember) was on 6 or 7 "clicks" out of 8. I just stopped Tymlos last month, so over 2 years.

One issue it that it tends to stop building bone. For me, tests showed that around 18 months. But it maintains. If I cannot tolerate anything else I may try to stay on it!

@jmla I am not sure if my spine was -3.3 or -3.6, and can't access the scores at the moment. However I have had 7 spinal fractures! I hope you haven't had any!

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Knock on wood I have not had any fractures yet that I know of. My bone quality (as well as bone mineral density) has been tested, and it’s in the osteopenia range (but headed toward osteoporosis, which is why my doctor put me on Tymlos). He said that some people find the efficacy wanes after 18 months, and for some it’s 2 years. We will have to see how long this works for me. I think if it’s more like 18 months, he will take me off of it and then have me start it again later on. I’m finishing my 2nd month and I’m up to 60mcg. 🙂 I’ll stay at 60 until my 3-month blood test and see where things stand. Fingers crossed that it’s working.

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jmla | @jmla | Jan 17 11:38pm
In reply to @bkb "I thought that Tymlos was limited to two years?" + (show)
@bkb

I thought that Tymlos was limited to two years?

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As WindyShores noted, the FDA lifted the two-year limit on Forteo. Tymlos won’t be far behind. If continuing for a bit longer prevents bone loss, I’m all for staying on it!

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jmla | @jmla | Jan 18 12:12am
In reply to @windyshores "@bkb the time limit was lifted on Forteo, and should be lifted soon for Tymlos. Those..." + (show)
@windyshores

@bkb the time limit was lifted on Forteo, and should be lifted soon for Tymlos. Those of us who started at a low dose have trouble determining how long we have been on it! I did Tymlos in June 2021, then restarted at a low dose Oct. 2021. and by Dec. (maybe, can't remember) was on 6 or 7 "clicks" out of 8. I just stopped Tymlos last month, so over 2 years.

One issue it that it tends to stop building bone. For me, tests showed that around 18 months. But it maintains. If I cannot tolerate anything else I may try to stay on it!

@jmla I am not sure if my spine was -3.3 or -3.6, and can't access the scores at the moment. However I have had 7 spinal fractures! I hope you haven't had any!

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@windyshores I think you said a few of your fractures were from trauma. I hope they’ve all healed and that you’re doing okay. You sound like an incredibly strong person. I also hope the Evenity is working for you.

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1 reply
windyshores | @windyshores | Jan 18 7:39am
In reply to @jmla "@windyshores I think you said a few of your fractures were from trauma. I hope they’ve..." + (show)
@jmla

@windyshores I think you said a few of your fractures were from trauma. I hope they’ve all healed and that you’re doing okay. You sound like an incredibly strong person. I also hope the Evenity is working for you.

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My traumatic fractures were 2006 @jmla. Thank you for your kind words.

My osteoporotic fractures were spring 2021. I did Femara, a cancer med, for 5 years that affected my bone density significantly.

Compression fractures in the spine can stabilize but they never really "heal." It is important for people to know that. I cannot lift much and have to be very careful how I move.

These fractures cause pain and disability, which is why I come on here to say that Tymlos took my spine from -3.7 to -2.5, severe to borderline, in 18 months.

I did up to 7/8 of the dose, and had never been on any other meds, which might have helped (I could not tolerate others and docs wanted to avoid Reclast at the time I did cancer treatment).

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2 replies
jmla | @jmla | Jan 19 1:28am
In reply to @windyshores "My traumatic fractures were 2006 @jmla. Thank you for your kind words. My osteoporotic fractures were..." + (show)
@windyshores

My traumatic fractures were 2006 @jmla. Thank you for your kind words.

My osteoporotic fractures were spring 2021. I did Femara, a cancer med, for 5 years that affected my bone density significantly.

Compression fractures in the spine can stabilize but they never really "heal." It is important for people to know that. I cannot lift much and have to be very careful how I move.

These fractures cause pain and disability, which is why I come on here to say that Tymlos took my spine from -3.7 to -2.5, severe to borderline, in 18 months.

I did up to 7/8 of the dose, and had never been on any other meds, which might have helped (I could not tolerate others and docs wanted to avoid Reclast at the time I did cancer treatment).

Jump to this post

@windyshores Thanks for that info about compression fractures. I didn’t know that. I’m sorry to hear that your fractures came from a cancer drug. I wish these medicines we take didn’t cause other problems.

My current bone issues are inherited. I’ve tried to remain active throughout life, but there was no escaping it for me. As I said, I’m up to 60 mcg and will probably stay here for another month before trying 70. I’m hoping this drug takes me to the borderline, or better, and reclast (or something else) can keep me there for a while. I have no doubt my bones will need constant attention.

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ymv | @ymv | Jan 19 7:31am
In reply to @windyshores "My traumatic fractures were 2006 @jmla. Thank you for your kind words. My osteoporotic fractures were..." + (show)
@windyshores

My traumatic fractures were 2006 @jmla. Thank you for your kind words.

My osteoporotic fractures were spring 2021. I did Femara, a cancer med, for 5 years that affected my bone density significantly.

Compression fractures in the spine can stabilize but they never really "heal." It is important for people to know that. I cannot lift much and have to be very careful how I move.

These fractures cause pain and disability, which is why I come on here to say that Tymlos took my spine from -3.7 to -2.5, severe to borderline, in 18 months.

I did up to 7/8 of the dose, and had never been on any other meds, which might have helped (I could not tolerate others and docs wanted to avoid Reclast at the time I did cancer treatment).

Jump to this post

My osteoporotic fracture tibia/malleolus was followed by a fractured patella both in March of 2023 and both requiring surgery. I started Tymlos in June. Waiting for results of my bone markers. Initially I started at 8 clicks and side effects bad. So dropped down to 6 for a month then went up to 7 for another month. Now on 8 with minimal side effects. Will repeat Dexa scan in June.

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