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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bella0923 | @bella0923 | Feb 13 10:29am
In reply to @jmla "@bella0923 Like you, I could not tolerate the full dose at first. Headaches (bad ones), fatigue,..." + (show)
@jmla

@bella0923
Like you, I could not tolerate the full dose at first. Headaches (bad ones), fatigue, increased heart rate. My doctor told me to dial it down to 40mcg, and I was fine on that dose. I clicked up to 50 after 1 month and then 60 about 3 weeks later. I sometimes took 1 Advil 2 hours before injection, and that helped avoid headaches the first few nights after upping my dose. I could stop the nightly Advil after a week. Last night I tried 70 mcg with no Advil, and I felt the same as I did on 60. My body just had to get used to the medication. As @windyshores said, we do expect some side effects, but the key is finding a tolerable level. Every 3-4 weeks has been a good timetable for me to bump up my dose. My body just takes that long to get used to things. In 10 days, I have my first blood test since starting on Tymlos. I’m hopeful that increasing the dose this way will prove effective.

Jump to this post

Thanks for your words of encouragement. I too have slowly increased my dosage & trying hard not to take Advil very often. My biggest complaint are the headaches. So far I am up to 5 clicks and anxious to increase.
I had to discard my pen yesterday & it bothered me seeing so much more serum was in the vial. Obviously, when you are not using the dosed 8 clicks for 30 days, there is going to be left over. I get it just can't believe 30 days is the limit!
I took @windyshores idea & called Radius regarding my concern. The woman I spoke to was not so positive about refrigerating the next pen to get more days out of it. I am, however, going to refrigerate this new pen & stretch it out for at least a few more days. The cost of my medication was astronomical, I hated to waste it :(.
Helpful to know others are dealing with these issues too, unfortunately.

REPLY
1 reply
windyshores | @windyshores | Feb 13 4:40pm
In reply to @bella0923 "Thanks for your words of encouragement. I too have slowly increased my dosage & trying hard..." + (show)
@bella0923

Thanks for your words of encouragement. I too have slowly increased my dosage & trying hard not to take Advil very often. My biggest complaint are the headaches. So far I am up to 5 clicks and anxious to increase.
I had to discard my pen yesterday & it bothered me seeing so much more serum was in the vial. Obviously, when you are not using the dosed 8 clicks for 30 days, there is going to be left over. I get it just can't believe 30 days is the limit!
I took @windyshores idea & called Radius regarding my concern. The woman I spoke to was not so positive about refrigerating the next pen to get more days out of it. I am, however, going to refrigerate this new pen & stretch it out for at least a few more days. The cost of my medication was astronomical, I hated to waste it :(.
Helpful to know others are dealing with these issues too, unfortunately.

Jump to this post

Radius cannot tell you that it is okay to keep it longer @bella0923. Both my docs have said it is okay. And actually I had to take a break for 2 weeks during COVID and I did talk to Radius and they said that since it had been in the fridge the whole time, I could still use it. I believe my docs said an extra two weeks was okay as long as it was kept cold the whole time. Do the shot and put it right back in.

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1 reply
jmla | @jmla | Feb 14 8:58am

@windyshores I am going to ask my doctor about keeping it in the fridge and using it after thirty days.

@bella0923 Does your insurance not cover this medication?

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1 reply
bella0923 | @bella0923 | Feb 14 1:27pm
In reply to @windyshores "Radius cannot tell you that it is okay to keep it longer @bella0923. Both my docs..." + (show)
@windyshores

Radius cannot tell you that it is okay to keep it longer @bella0923. Both my docs have said it is okay. And actually I had to take a break for 2 weeks during COVID and I did talk to Radius and they said that since it had been in the fridge the whole time, I could still use it. I believe my docs said an extra two weeks was okay as long as it was kept cold the whole time. Do the shot and put it right back in.

Jump to this post

I appreciate your input @windyshores! I am presenting keeping my 2nd pen in the refrigerator. I use it and return it to the fridge. Two weeks sounds like a reasonable amount of time to extend it.
This is just what I needed to feel confident with my decision. Thank you!!

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bella0923 | @bella0923 | Feb 15 9:58am
In reply to @jmla "@windyshores I am going to ask my doctor about keeping it in the fridge and using..." + (show)
@jmla

@windyshores I am going to ask my doctor about keeping it in the fridge and using it after thirty days.

@bella0923 Does your insurance not cover this medication?

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Our insurance does help a little with this medication but the number/cost is still astronomical. Does your insurance pay for most of it for you?

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1 reply
mary219 | @mary219 | Feb 15 3:04pm

I had radiation for breast cancer 13 years ago can I go in Tymlos ?

REPLY
jmla | @jmla | Feb 16 6:48pm
In reply to @bella0923 "Our insurance does help a little with this medication but the number/cost is still astronomical. Does..." + (show)
@bella0923

Our insurance does help a little with this medication but the number/cost is still astronomical. Does your insurance pay for most of it for you?

Jump to this post

@bella0923 I have insurance through my employer, which does help a lot. I know without insurance this medication is super expensive.

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