Great interview with Dr Keith McCormick, very helpful

@rjd I had my PCP order bone marker tests one time and a second opinion endo one time. I don't remember which one was at 18 months.

I stopped Evenity because of side effects and didn't mind since I hoped I had at least gotten a 4 month boost from the Evenity. I had bone markers done during Evenity (twice) but timing was off. They did not show the expected bone growth going on but the testing was too late I think.

So it was decided that Tymlos stopped working based on bone marker tests? Or did you also have any DEXA scans during this 22 month period (18 Tymlos and 4 Evenity)? If so, was there any correlation between the DEXA result and the bone markers?
Best of luck on the upcoming Reclast....

Hey Windy,
I still have my first doses of Tymlosnin my fridge and haven’t started them yet after 3 weeks. I’m trying to confirm that you use titration with this med. I’m scared crazy to inject myself not knowing how severe a reaction I may have.I live alone. My own rheumatologist who prescribed the drug isn’t clear on whether you can start with a lesser dose and build up to the 80mg possible? So I see my PCP next week and hope I can get some clarity.

@pgn are you willing to just go ahead and try? I first tried a half dose ( 4 clicks, 40mcg). Many of us seem to have some reaction at first but not that "severe" for most and very manageable. You can certainly start at 2 clicks but move up as fast as you can toward the full 8. This is just a way to deal with anxiety for most people. You will feel reassured and move forward. I don't know your PCP but if they don't know about starting low, are you not going to do it?

My world class endo does this with his patients. It is okay. Titration does no harm, lets your body say hello to the med, reassures you, and should allow you to move along on dose quickly.

@rjd I had bone markers and DEXA at 18 months and they did not match, no. I had a large 20% gain in spine and yet P1NP was not very high at all (50?). Both my endos suggested I finish the two years anyway, which I did.

Thanks Windy for your reply. I live alone and just have some real anxiety about starting this drug and possibly having a serious reaction. Conflicting thoughts about whether or not you can deliver a lesser dose is possible? It would appear that it can be.
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Appreciate your encouraging words! The only advice I had gotten was it might feel like a “Hot flash” for a few minutes.

I live alone too. I can't imagine a serious reaction in the sense of being dangerous (and I have occasional afib). To deliver a lesser dose you just do fewer clicks on the pen. When you rotate it to deliver a dose it clicks. Full dose is 8 clicks. It isn't going to hurt you to do a lower dose but it might hurt you to wait too long to take it (I don't know your bone situation).

People do lower doses of all kinds of medications to try them out. I often take 1/4 of a pill for instance (as long as it isn't time release).

Windy is right on the money with this one. I also live alone and plunged in at the full .80 dose right from the get-go and had some heart palpitations and BP drop that scared me. Windy had suggested the lower dose to start allowing my body to acclimate if you will. I told my Rheumatologist this is what I would do making certain I could tolerate the medication. I am finishing up my first month and have gone from .20 to .60. Very manageable. Living alone the fear of falling and NOT doing anything to improve bone health out weighed living alone and managing the side effects of Tymlos. Go slow and let us know how you do!

@lhankins that is so great! I was told .60 was therapeutic, and my doctor was happy with it. But I did get to 7 clicks and on days when I had nothing important to do, even did 8. So glad to read you have gotten onto it.

Such a great point about living alone and falling/fracturs vs Tymlos side effects. I have permanent pain and some disability from fractures and the side effects of Tymlos were a picnic compared to the fracture consequences, for me. (No disrespect to those who truly can't tolerate it!)

I flipped on my road bike at age 48 and had multiple fractures to my ribs, collar bone, ocular bone and lower back. I was already living alone and that was awful but I survived. The Tymlos side effects now are so predictable that I am learning to schedule my life around it. I cannot thank you enough for that initial advice of dosing down to start! What a difference it made for me.