Timing of Tymlos Injection-AM vs PM

Hi @marymj7, I am responding to an old post, dated Sept. 26, 2023 so not sure you are still active on this site now. But since you would have passed the 2 year mark by now, I am curious what your results on Tymlos were.

My lumbar spine is -4.1, so hoping like you that I will see improvement if I stick with it. I started Tymlos 2 weeks ago and so far the fast heartbeat and low blood pressure are my only side effects.

Hope it was very worth it for you!

Hi @mary1951 . I sadly had to quit taking Tymlos after 3 months due to hypercalciuria-high urine calcium. Turns out I have the issue at baseline and Tymlos doubled it. It should have been tested before I started on Tymlos. Such a shame, as my P1NP had doubled at the three month mark. I think it’s a remarkable drug and I hope you get great results!

Hi @marymj7, I am responding to an old post, dated Sept. 26, 2023 so not sure you are still active on this site now. But since you would have passed the 2 year mark by now, I am curious what your results on Tymlos were.

My lumbar spine is -4.1, so hoping like you that I will see improvement if I stick with it. I started Tymlos 2 weeks ago and so far the fast heartbeat and low blood pressure are my only side effects.

Hope it was very worth it for you!

Hi Marymj7,

Thanks so much for responding to my question. I'm sorry you had that side effect though! I know that can be serious! It's a good thing your doctor was testing you regularly for it, or did you have symptoms?

Did you go on to another drug?

That's very encouraging that you had such a good increase in only 3 months, though!

This encourages me tremendously. Thanks again.

What does your doctor say about how to treat the fast heartbeat and low blood pressure symptoms? Thanks so much.

@mary1951 I had some dizziness but my doctor tested me at the 3 month mark because that is protocol. I am eating low sodium to try to get the urine calcium down. I don’t think any drug will help much until or unless I can stop losing so much calcium

@susanjohnston, I can't say my endocrinologist has been very helpful in giving advice. I sent some messages through my portal to him with some questions about the fact that my blood calcium levels are typically on the higher side of normal, and having tests done before I started Tymlos, and he pretty much blew me off. He wants to see me in a year, which I think is ridiculous. Taking a powerful drug like Tymlos, I would have at least hoped he'd want to check my blood levels in 6 months!

Anyhow, the people on this site have helped much more than the doctor and nurse, who was very rude when I asked her questions about how to do the injections. So I listened to @windyshores and @gently and drink a couple glasses of water before hand and eat something salty before hand as well, and I believe that has helped. My blood pressure is normally low, so I am used to eating salty stuff during the day, even though I know salt is not good for you. In my case, I seem to need it. I have had hyponatremia multiple times, and once ended up in the hospital almost in a coma from it, so I am used to eating salty stuff whenever I feel symptoms starting, or see that my blood pressure is lower than my normal.

The rapid heartbeat is also something I am used to, so I don't worry about it, as it is short-lived. But I think I read on this site that someone said elevating the feet above the heart helps. I have an adjustable bed, so I have been elevating my feet for about 20 minutes after the shot and that does help.

Hope that helps.