TYMLOS AND TITRATING DRUG

The Tymlos people are wrong. The pen is not set to 80. It's set to zero. You have to turn it, "click" it, until the little window reads 80; that is as far as it goes. What they aren't telling you is that each little click equals 10. Eight clicks equals 80. Once you inject, it goes back to zero, and you start over the next day. I've been using Tymlos for 15 months - I can see that pen in my sleep. 🙂

The issue is that only the full dose of 80 was tested, so that is what they are telling you. That doesn't mean a lower dose isn't effective. A number of people here use a lower dose because they can't tolerate 80.

After 15 months, my abdomen is fine. It's not like you can see 400 marks. The needle is very thin. I rotate - I have four areas on each side, and I just alternate left and right.

Thank you so much for telling me this! I haven't started yet, So I haven't looked at the pen yet. Did you start with 40 mcg? Robin

No, I started with the max. But, I'm male, 5-11, 175, so maybe I can deal with the max dose easier than someone who is smaller?

The usual advice was to start with four clicks. If that goes well, try five the next day, and so on. If not, go to three. The idea is to find out what your limit is. Let's say six is a problem. Go back to five for a few days and see if your body gets accustomed to it, then try six again. Given that you can take Tymlos for two years, using a few weeks to ramp up isn't a big deal.

You'll see that the pen only shows 80. The clicks prior to that just have dots. You'll have to count each click yourself, there's nothing that says 30, 40, 50, etc. It will be obvious when you look at the pen. Also note that the clicks go in both directions. You can click up to 80 and then click down. It's not like it only works in one direction and then you're stuck. So, you can fool around with the clicks up and down before you actually use it.

Thanks for the detailed instructions. Robin

njx58, Pretty good instructions. You should cut and paste them and keep them handy on your desktop, cuz it seems like every few weeks someone gets told they need Tymlos and has the same dosing concerns 🙌

I think people need to learn how to search. All of these issues have been discussed many times, be it Tymlos dosing or side effects or Reclast or Prolia or whatever. MANY times. 🙂 There are a lot of good threads if one just looks for them.

I think a lot of folks join the chats because they’ve been diagnosed but given inadequate info, and they’re anxious and maybe panicky. Broken bones are a scary prospect and compromise people’s ability to think logically about embarking on a journey that involves injecting yourself everyday, and costs thousands of dollars a month for a couple years. When my orthopedist said ‘You have osteoporosis and the best treatment is a med you take everyday by injecting it into your belly’, I said I can’t do that what’s the plan B? I was terrified at the idea of injecting myself, but once he explained what it was really like, and once I watched some videos of how to do it, it seemed possible, and now I’m into month 8 and it’s easy peasy, but at the start I wasn’t thinking logically and you’d have had trouble convincing me. The Tymlos rep gave me some helpful info, and I’ve benefited from people on this chat who encourage not being rigid in interpreting the ‘rules’. Sometimes that information is readily available if you know how to find it, and sometimes it helps to have someone point the way to it. Like it or not new readers will continue to ask what the clicks are all about. And what the side effects are. And how do you find new places to inject day after day. I’m glad you were able to describe it so clearly; hope you’re prepared to do it again😁

My doctor had me start with one click and then increase every few days until the full dose was reached. He had me inject into the thigh. It has been 3 1/2 months and so far, so good.

I started at the full dose without any issues. My heart rate did increase about 10% for 30 minutes after a dose. I used Tymlos for four months and always injected in my belly. I weigh 145 lbs so am not underweight so maybe that’s why I had no issues.