Titration with Tymlos?

@pgn, you've come to the only best place to find out exactly how to do this. @windyshores will be checking in with you soon. I think she may be gone already this evening.

@pgn the Tymlos company (Radius) is limited by what studies were done. In my opinion the company needs to do a study on reducing side effects by ramping up, because this idea is no doubt increasing their sales!

Your doctor may feel similarly about following studies. My own doc, who is chair of endocrinology at a major hospital, has started to use this method for patients who have a hard time getting onto medications.

You can do this yourself but two cautions: keep the Tymlos in the refrigerator so it lasts longer, because if you ramp up slowly the pen will last more than 30 days. Don't use it too long but my doctor and pharmacist both said it was okay as long as it stayed in the refrigerator. And you will need extra needles.

I started at full dose, then half dose, and after an afib episode (I already has afib and I doubt Tymlos was the cause) decided to be more cautious and did two clicks of the pen each day for a week, then 3, then 3 and ended up wtih 7 out of 8 clicks long term. I had excellent gains and went from severe to borderline.

This method worked for me but I moved up as fast as I could and also had to realize that side effects will happen regardless. This is not a way to eliminate all side effects but this approach made them more than tolerable for me. Much better than the pain of my fractures!

If you are sensitive to meds or have any medical issues that justify trying to start low, you can just do it. If you are anxious but don't have sensitivity or medical conditions, you could try full dose first. Regardless of what dose you start at, most of us find that the body adjusts and side effects go away (I had a headache for a week).

Because of extreme exhaustion I asked my Dr. if I could scale back on the dosage. My pen says 80 also-but she said it was impossible to do that, so I appreciate your information, Windyshores. Of course, after complaining to the Dr. within a few days my exhaustion did get better. So a big thank you for the people on here that told me to hold on-that it would get better. She did tell me to go off the Tymlos for 2-3 weeks and see if that made a difference. She also said tiredness was not a side effect of Tymlos, but I see other people on here have experienced extreme tiredness too. I am almost a month in, so I did not want to do that and go through the side effects all over again. Although I am still tired the extreme has disappeared, and walking does help in the morning.

Fatigue is definitely a side effect.

I told my doctor about lowering dose and ramping up and he now used it in his practice. Your doctor sounds a little inflexible. People on this forum have posted gains with a half dose. I went from serious osteoporosis to borderline with 6/8- 7/8 of the full dose.

If you can tolerate it now, great! I went up and down a bit and if I had something important to do, I did 6 clicks.

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

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 🙌