Can Tymlos side effects appear after over a month on the stuff?

When you lowered your Tymlos dose, was it by half? I started Tymlos several weeks ago and experienced intense side effects and I stopped it altogether. Thanks!

@lyleswan I restarted at two clicks out of 8 and moved up. Even a half dose was a problem for me initially. After maybe 6 weeks I got up to 7 out of 8 clicks and stayed there.

Oh dear! You’ve really been put through the wringer, @anewyorker. I asked my doc how quickly results can be measured when using Tymlos and he said as soon as six months so my fingers are crossed for you. And, I agree, no housework ;). I’ve had four vertebral compression fractures. After I had been on Tymlos for a bit, my doc told me that, except for the fractures, he wouldn’t have prescribed Tymlos because my t-scores weren’t off the charts bad. Now he tells me! Thanks for weighing in. Here’s to us all for having better bones and living a stronger life. Cheers!

@anewyorker , I started Tymlos several weeks ago. I did experience short lived nausea, back pain, headache and racing heart. Typically these lasted only a few hours. A week after starting Tymlos, I began to develop gastrointestinal symptoms (as you describe) which did not stop and I couldn't function. I stopped the Tymlos and felt better after 24 hours. I plan to restart on a smaller dose. How are you doing now?

Thank you. Please, remind me, did you continue for 2 years?

Yes. Gains were measured on DEXA at 18 months. I went from -3.7 in spine to -2.5.

I’ve been on Tymlos for almost 2 years and side effects can occur anytime during treatment. I’ve had the nausea, rapid heart rate, bone pain, fatigue and most recently, increased fat in my lower belly (seems to be an occurrence with some women). My latest DEXA scan revealed an 11% improvement in my spine so that’s a positive result of this medication and the reason we tolerate the side effects. Consider injecting before you go to bed, as you can likely sleep thru some of the side effects. That worked for me. Now as my 2 year mark draws close I have to carefully weigh my options for another medication to insure my gains don’t decrease. It took me 2 years and lots of stress to finally follow doctor’s orders on the Tymlos. Now, I have to begin that difficult process again. Lots of prayers for all of us that have been burden with this condition. Rose 🌹

It sounds like you had a horrible time, @lyleswan. I hope the lower dose does it for you and that you’re feeling better.

I’m still having occasional problems with nausea and bloating for an hour or two after the shot, which is uncomfortable but not enough to make me stop taking it, especially since there are really no other options. For some reason even the generic Forteo was more expensive; Tymlos will cost only (insert ironic expression here) around $4000 this year and less next year because of the 2025 Medicare Part D cap.

I’m amazed at how differently we all react to these drugs. I’ll never look at a general list of side effects the same way again.

We also differ in best timing. I did better doing Tymlos in the morning!

Keith McCormick recommends we check our P1NP before we start Tymlos and 3 months later to determine whether it’s working. My doctor doesn’t seem to want to order that. Have any of you asked for that blood test and how did your doctor respond?