Tymlos One-on-One Support program?

@grace10 I found the Clinical Educator to be pretty helpful. She went through the brochure that comes with the pen item by item, which on the one hand was a bit too maternal for my taste, since I'd already read the brochure carefully; but she couldn't be sure of that and was just doing her job. And on the other hand she was prepared to - this was all done via Zoom - watch me do my first injection in case I wanted her input or reassurance or whatever. I didn't; I wasn't prepared to do the shot at that moment, but I appreciated her offer to come back online when I was ready. She also clarified something that was for me a big concern: mapping out my belly for where to inject each day. the literature includes a lot about selecting the spot carefully, etc, and she basically said don't obsess over it, just don't do the same spot two days in a row. Full disclosure I had watched the Tymlos videos and some others that I found on YouTube for how best to inject yourself, so when it was actually time to do it I felt like I knew what to do and expect. She also talked about the possible side effects in a more human way than the brochure. And she invited me to call her after I did the injection if I was freaking out or had any concerns.

So IMO it was indeed beneficial; I learned a few important things and it definitely added peace of mind.

No, I got most of my help from people on this site!! Started in October and doing fine on it, worked up to full dose and inject in the morning.

Hi,
I am on Tymlos and after 18 months, no significant improvement (T-score -3.2 [spine], -2.9 [hips] / same #s after a year of Rx). I have been taking calcium and vitamin D supplements adding to my dietary intake. Not a smoker or drinker, not obese but strong family history. Exercise regularly. My doc is recommending a year of Evenity now. Still thinking about but likely will go through it. Would like to have bone turnover markers done.

I am quite sure I will start taking the Tymlos shot, having had two compression fractures within 15 mths. However, given the choice and if approved by the VA, I would prefer an alternative therapy with stem cell. I may look further into it having gone through PRP shots for other issues in the past that rid me of painnfor years now.

Thank you all for your feedback. This has been very helpful to me.
@idlehands, thank you for detailing the benefits and challenges of your experience!

@ Jackie21
I wonder why the Tymlos didn't work for you? Did your doctor have any thoughts on it? So many people on this site recommend it, that it makes me wonder why it works for some and not others. I've been on it for 2 months and fractured a rib a couple weeks ago, so wondering why the Tymlos didn't protect the rib. I personally would much rather not take the shot if it's not going to help me, as I frankly don't like the fast heartbeat that persists an hour and a half after taking it. I'm also at risk because I've had radiation. So just wondering if others have had a similar reaction of not experiencing improvement on Tymlos?

I am interested in you getting a reply. I had radiation from breast cancer 20 years ago but my breast cancer oncologist and surgeon had no issues with me taking the medication being my radiation was more directed to tissue is my guess. I’ve been given the impression that the radiation issue is with direct radiation to bone. I wish Tymlos would clarify this but thinking they are leaving that issue with our physicians.

My guess is that the Tymlos just didn't have enough time to work in your case. Building bone takes a long time. For example, turnover of our entire skeleton (breakdown and replacement) takes 7 to 10 years.

I had a lower T-score of -4.6 in the spine and have been on Tymlos for 8 months so far and am waiting for results. I was told it takes about 4 months for Tymlos to offer some protection from fracture.

@maggie2591
Thanks for the response. Yes, mine is in the 4's too, unfortunately. Sure hope it works for us both!