I wonder if Tymlos and Forteo only help trabecular bones.

Hi @drsuefowler, Thanks for your support.

I quit Tymlos after nine months; the last five were pretty debilitating. My doc knew about each new issue and I ended up telling him the cure was worse than any fracture I could or have suffered. Doc said no medical info about my symptoms.

Switched to Evenity and breathed a sigh of relief. I phoned Radius and made a long statement about symptoms and noted that several now appear on their website. Felt like a pioneer! 😆 Cheers!

Hi @drsuefowler, Thanks for your support.

I quit Tymlos after nine months; the last five were pretty debilitating. My doc knew about each new issue and I ended up telling him the cure was worse than any fracture I could or have suffered. Doc said no medical info about my symptoms.

Switched to Evenity and breathed a sigh of relief. I phoned Radius and made a long statement about symptoms and noted that several now appear on their website. Felt like a pioneer! 😆 Cheers!

I was disappointed w/Tymlos results - my doctor was too. Unfortunately, they had no helpful insights or answers. Spine improved slightly; hip not at all. Still osteoporosis on the DXA. Doc now mentions prolia - doesn't mention any concerns like the difficulty of stopping after starting, (which I only learned about here). Concerning for women in their '50s. We could be on it for 3-4 decades!

I know my post probably isn't as helpful - others are chiming in with better info. Just think it's important to realize that some of us may not get the results often touted here or by our docs. We can do everything right - meds, diet, weight training, zero smoking or booze and still have issues. I feel like some docs oversell us on the effectiveness?

Thanks for sharing @katwhisperer, and I think your post is helpful. I am so sorry to hear that Tymlos didn't work for you. My endocrinologist wants me to take Prolia after Tymlos. I do not want to do that due to side effects and having to take it the rest of my life. He says he has 150 women on it. I asked the gynecologist if they help with choosing a medication, and she said they didn't. They just give everyone Prolia. This is a cash cow not only for the pharmaceutical company, but also for the physicians. They get paid for an office call and giving the infusion to every patient forever. The doctors only know what the drug sales people tell them and what they read in medical journals or see on the Internet. My doctors are so busy that I can't imagine them spending time researching osteoporosis, when they can easily just prescribe the popular medication.

Yes @windyshores I think it was me. I am so sensitive to medication and usually only do take half a dose of anything. I had also asked my endo about a lower dose, and he was fine with it. You had great results with a partial dose, but higher than what I am taking. I plan to talk to my endo about this. Maybe I should consider Evenity? I appreciate that you have posted ways to use partial doses with Tymlos, Evenity and Reclast. There has to be a way for us overly sensitive people to strengthen our bones!

Jumping in regarding dosage. I am also sensitive to medications, and cut pills in half a lot. I had terrible side effects with the full 80mcg of Tymlos at first, so I dialed it back to 40 for a month. I’ve been increasing slowly since (10 mcg about every 3 weeks), and I’ve now been on 80mcg for the past 2 weeks. I do have some side effects (headaches and increased heart rate), but they fade quickly and they’ve gotten less severe. My doctor says that everyone’s therapeutic dose may be a bit different, but if I only have 18-24 months to take this drug, I wanted to get the full effect for as long as possible. If you can try to gradually increase maybe one click per month, your body may respond well. Up to you and your doctor, of course.

@jml, I was surprised that I could tolerate 40 mcg. I have occasional headaches, dizziness when I move quickly, and a rapid pulse now. That is great that you can take the full dose. Maybe I could. I will discuss it with my endo at the next visit. I hope to have my CTX and P1NP checked to see if the markers indicate that I am making bone and not losing too much. Thanks for sharing.

I had those side effects (not so much dizziness but the others) as well but they were transient and faded to much milder after a few weeks. Each time I bumped up the dose I would experience them again at first. I’ve been at 80 for 2.5 weeks and I’m getting used to it. I doubt I’ll ever be free of the side effects completely, but I take my dose at night, so I’m able to tolerate it and can lie down if I need to. Day time is better for some people, but it wouldn’t work for me. Best of luck with this.

Even 60 mcg would be good @drsufowler. I had great gains with 6-7, mostly 7 clicks for the last year.

My CTX and P1NP did not match expectations that I had given my 20% gain in spine and 9% gain in hip. But I had them done at 18 months. I stayed on Tymlos for another 6 months regardless. I was told bone quality would be improving even if bone growth had stopped and fracture risk would continue to go down.

I have become skeptical of these blood markers to be honest. They don't match expectations with Evenity either. One of my endos says they don't show what is going on in bone, and one uses them but with caution about their reliability. McCormick uses them but says they have to be done fasting (CTX does, P1NP not as much) and at the same time of day, early morning.

Also kidney disease may raise CTX.

It helps to have a reliable baseline. Unfortunately my baseline CTX was not fasting but I can at least go by the P1NP baseline! Oddly my P1NP was higher before any treatment. I am wondering if that is some kind of estrogen rebound after taking anti-estrogen meds for cancer and have to remember to ask doc!