Treating Osteoporosis: What works for you?

I have really good doctors but I had to wade through a lot of not-so-good ones to find these. And 2 will likely retire soon. Having the not-so-good ones is how I became The Reluctant Researcher, lol. [Not exactly true as I'm a researcher by nature and it was part of a career.] I developed test questions that I subtly fit into conversations with prospective doctors and never went back to those who unknowingly failed an interview.

Then double-checking everything, including prescriptions, became second nature, which is actually good. A hospital nearly killed a friend with meds he's allergic to...as noted in his %:#! record and all family pets can only be seen with me in the room after a different near medical negligence. A family friend who heads a hospital says his only real fear is ending up in one with someone who cares about at his side 24/7. So I think that, it's best if patients question and double-check stuff, get second opinions (which insurance companies have become more willing to cover once they started seeing the financial payoff) and value their own thoughts and doubts and get more feedback if necessary to have confidence about medical decisions. No matter how well-intentioned medical personnel are, I'm the only one who was to live with any unintended consequences!

Whether recommended or not there is sufficient evidence to suggest it is a bone healthy vitamin. You cannot rely solely on a doctor’s advice; my doctor didn’t even know enough about it to have an intelligent conversation about it … a vitamin!

A neurosurgeon friend and my PCP, endocrinologist and female cardiologist (who was s college gymnast and reed thin so worries about some future osteoporosis all recommend vitamin K2. Aside from some other benefits, my cardiologist takes it (and put me on it) because there are several studies showing that it helps prevent free-circulating calcium from building up in arteries. I don't know if K2 would be as important if one's calcium came only from food sources, with no calcium supplements though. I take calcium so also take the D3 and K2 and magnesium, potassium and silica...hopefully in some vaguely intelligent overall balance ;-).

Is K2 useful in osteoporosis treatment? Do the endocrinologists recommend it?

Hi there! I used the pen until all medicine was gone, but kept it in the refrigerator. My doc said that was fine.

Technically my year would be up in October I think, when I first got to 6 clicks. You are right, I want to do Evenity next.

I am taking care of my elderly mother on hospice right now and my Tymlos side effects are almost nothing at this point at 7 clicks. I might even try 8.

It is hard for doctors in other specialties to give opinions. They don't really know and are afraid of liability. I talked to three cardiologists and three endocrinologists after the ER and my main doc basically said it was up to me. I actually think a pharmacist might be more helpful.

You are dealing with SOOOO much. I hope you can go back on and start at 2 clicks and see how it goes. I find Tymlos to be the least threatening in terms of health. The best of bad choices I guess.

Please keep me posted and take care.

@windyshores Hi, are you talking about June 2021 till now? When will your year be up to know if you have made enough progress to change meds? Then maybe start Evenity. Have any idea how much in progress will be enough? When you started back slowly, did only use the pen for 30 days then start a new one with some leftover to throw or use up that pen till gone. Still wondering whether to give up Tymlos or try again slowly since 6 clicks were fine and no side effects. Or maybe the Endo and Cardo Drs. should make the decision for me as to which path I follow. Very unsure at this point which road to follow. But having input from those that have been there really does help. Hope all is well and please keep me up to date with new information as it comes. KLH

Some studies I read note a significant percentage of serious fractures in women with osteopenia. But the study speculated that they were younger and more active women in general since the percentage of compression fractures was higher among women with osteoporosis. So the latter group likely was more risk-averse in general. I mean one can fracture a bone at any age if damaged in sports activity or other common cause. But I think there few absolutes with any of this stuff.

One study I read, and I wish I'd saved it, questioned whether bone density should be such a singular, significant risk when it tells little about overall bone health. The doctors who wrote it noted cases of very strong and resilient bone of, nonetheless, lower density. The suggestion was that some bodies develop stronger though less dense bone. As if bone, in cases of patients with low density, developed a kind of lightweight carbon steel bone as a result. I wouldn't count on it but the human body is still an enigma so who knows what science will know in 50 years?

I have 6 more months free. My doc is going to do a DEXA after a year, and said if I made enough progress he would "save a year for later." But now there is also Evenity. I'll let you know!

ps the math does not add up because I started in June and went to the ER mid-June then stopped Tymlos and got rid of 2 1/2 months supply. Then decided to try again with the slow ramp up. Radius will not replace the boxes I discarded (they would not accept returns) and they are counted in the 18 months I get for free.

On the other hand I have read comments on this blog from people who have fractured with osteopenia not osteoporosis. In my own case, I chose to do nothing until about 5 years after my osteoporosis diagnosis. 67 and no fractures yet (well there was an ankle long long time ago..tripped going down stairs).
All that FRAXL algorithm stuff unfamiliar to me.
I do worry about falling. I need hip surgery in a very arthritic hip. Falling not an option;)

I had duodenal erosion some years back, which healed fine. But it was why I didn't take Fosamax for osteopenia. Then researched more and read what you noted, that current thinking is to not start drugs for osteopenia anyway.

I'm still curious that 2 DEXA scans, 6 years apart, had almost the exact same bone density numbers except the lumbar spine actually improved. Yet the T-score numbers got somewhat worse. That makes zero sense unless the FRAXL algorithm puts me at higher risk only because I'm 6 years old and is presuming imbalance and/or a fall risk. Neither the endocrinologist nor PCP could explain that oddity.