@lolamarie why did you lose hope about Tymlos? I had amazing gains. Many others have posted on their success in getting onto a therapeutic dose by starting with 1/4 dose and moving up. That option should be reassuring for you. I had NO side effects on 1/4 dose and after maybe 6 weeks I could do 7/8 dose very tolerably, even though initially a half dose was torture. I hope you will try this. I actually miss my Tymlos!

It seems we are in a similar place with decision making. Many varying experiences, each of us unique of course. Such important information here to help us make informed decisions. In the end, I am always a gut making decision-maker. I Remain open and listening, and not sure yet what my Gut decision will be.

Lola,

I think you expressed how most of us feel: "I'm frozen with fear....either way scared to take the drugs and also scared not to take drugs" My spine was at -3.8 before my parathyroidectomy, and -3.4 one year after the surgery. That is the best recovery I can hope for from the damage of long-term malfunctioning parathyroids (which probably caused the severe osteoporosis in the first place). My endocrinologist tolerated my medication aversion for a couple of years, but then she got tough with me, recommending Evenity. I, too, was terrified by the black box warning regarding stroke or heart attack, so I pushed back. I set to work educating myself, which led me to this forum, which led me to Keith McCormick's book, Great Bones. I also made an appointment with a doctor who had made osteoporosis his specialty and set up a special osteoporosis clinic, and who is now a professor at UCI teaching doctors about this topic. It took me months to get in with him, but it was so worth it. He listened, answered my questions, and when I came up with one that stumped him, he did the research and got back to me on it two days later. The question was about my coronary calcium score, which is very high, and my concern that Evenity + coronary calcium would mean disaster. After doing research, he told me that the studies that revealed the heart concerns with Evenity were not particularly strong, but that there was good research regarding the relationship between Evenity and coronary calcium. He said that in my case, he would not recommend Evenity. I have to admit that as resistant as I have been, I was quite disappointed that I wouldn't get to receive the benefit of this amazing drug.

I consulted with my cardiologist and then thought long and hard and decided that I would take the risk and start the Evenity and give it three or four months. The reason I conceded is the fear of a fracture. The specialist told me that 1/3 of people who have a spinal fracture DIE WITHIN ONE YEAR! Yikes! Would someone please tell me what's behind Door #3?! When I told my endo that I was conceding, she suggested that six months would be better. We'll see how it goes. I have my first infusion in two weeks.

One more thing: one of the most important topics often not discussed with regard to these drugs is the relationship between medications like Forteo and Tymlos and your parathyroids. I have only one parathyroid left, and if it stops working, I will be in deep juju. For this reason, my endo will not let me use those drugs. The risk of them damaging that last parathyroid is too great.

I wish you all the best. It is a tough decision for all of us, but sadly, one that only we can make for ourselves. Just do the best you can to educate yourself.