Dosage Adjustments On Tymlos Pen

I am new to using Tymlos, on it for 2 weeks. I see some people write about terrible side effects, wondering what your side effects are. I am experiencing terrible headaches. I am taking 3 Ibuprofen & a sleep aid 20 minutes before injections & go straight to bed, hoping to fall asleep before the headache starts. Most of the time it works but I certainly don't see this as a long-term plan.
Please tell me if those of you who reduced the dose consulted with your doctors or just did it on their own. I'm desperate to make this work but the headaches are just taking over me.
So happy to have found this group, nice to know I'm not alone.

@bella0923 I did the dosage adjustments on my own but told my doctor. He now uses this method in his practice when needed!

In my experience the headaches went away in a couple of weeks but going down on the dose should help you. I also switched to mornings and the headaches didn't happen- no idea why.

You could try going down to 4 "clicks" and if that doesn't work, go to 2 and work your way up. I had excellent gains on 7 clicks, sometimes 6, and never the full 8.

I started Tymlos in June 2023 and had severe headaches on the full dose (8 clicks). After a month I dropped to 6 clicks and told my doctor. Headache less severe. Worked back up to full dose in October. Headache intensity less. Now rarely have a headache. I also had severe low back pain for 4 months

Thank you for your input!! I did email my doctor and he was definitely in agreement with me dialing down. He left the number of clicks up to me. I tried 4 clicks last night and am very happy & thankful to say I slept fine and did not wake up with a headache. I think I'll keep it at 4 for a week or two and then think about upping the clicks. Interesting you switched to the morning, glad you are having success. 🙂
I appreciate this support group very much. I thought I was losing my mind.

If 4 clicks is tolerable you are in good shape! Four is therapeutic, I was told, but of course the more the better. In the beginning I could not even tolerate 4 but I eventually got to 7. I did do the full 8 toward the end! I also varied between 6. 7 and 8 clicks depending on what I had to do. Some days , no side effects, other days there were- who knows why.

I have low blood pressure so for awhile I checked it afterward because low bp from the shot can cause some of the symptoms. I drank water and sometimes ate something salty for the hour before. I have occasional afib but Tymlos did not trigger it at all.

When I did it at night, I would wake with a horrific headache. But that was at the higher dose that I first tried. I did find that symptoms were better if I got up and out, which is kind of counter-intuitive. At first I would lie in bed and feel woozy. Then I tried getting up and going about my day and for some reason felt better. We are all different! I guess the point is we can play around with things to make it work 🙂 Good luck!

I am wondering if everyone throws their pens away after 30 days, despite having medicine still in the pen? I have not been able to get past 2 clicks, so naturally, I have extra medicine in my vial after the 30 day throw-away time.
I hate to just throw it away, my medication costs so much money!!!!! I'm wondering what everyone else does who still has leftover medication past 30 days. So nice to have the support of this group. 🙂

@bella0923 no don't throw it away! As long as it is refrigerated. My doctor and Radius okayed this for me. If you are only doing two clicks, you probably will have to discard it at some point. Any chance of going to 4? In my experience I never was free of side effects so the goal was tolerability and ability to function. I got to 6 then 7. My doc said 4 clicks was therapeutic. I never asked about 2. Have you had blood tests to see if it is working?

Tymlos doesn't need to be refrigerated once it's open so therefore, it's not refrigerated.
I am worried about going beyond the 30 days but hate to waste the remaining meds.
I have been on 2 clicks for 2 weeks now. I"'m going to try 3 clicks for a week or two and see if the gradual increase of the clicks slowly will help me to tolerate it. It was the headaches that were getting me so down. I just started a month ago so still testing it out.

If you haven't refrigerated it, you need to throw it out after 30 days. If you refrigerate it, it can last at least a couple of weeks longer.

The whole thing about not refrigerating it is just silly. The idea is that it is somehow less painful to inject with Tymlos that is not cold. It is too late now but next time you get pens, keep them all in the fridge and when you travel or take it out with you, wrap the box in a paper towel and use ice packs in a cooler.

If you ever get to a full dose of 8 clicks, you can keep it out of the fridge but there is no reason to.

@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.