Dosage Adjustments On Tymlos Pen

@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.

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.

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.

@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?

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?

@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.

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???

Sounds like you did well @joniterry. In my experience, the body adjusts. Maybe you could now try 6 clicks. You could do that for a week or two then move up to 8. Make sure to refrigerate it because the pen will last longer than 30 days this way!