Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

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.

REPLY
@callalloo

The current recommended daily calcium for women is something like 1000 mg/day, higher for women over, I believe, age 70. (In which case the general consensus is 1200 mg/day.) Does the Bone Strength have enough calcium or are you relying on diet for that?

The formula that I take has 1300 mg/calcium from algae but I don't take the recommended 4 capsules a day. I figure 3 is enough and, as I get more calcium from foods, I may cut back more. The reason is that I read a few studies that suggest calcium from supplements might build up in the arteries but calcium from whole foods doesn't seem to. I figure the K2 protects against that, as does my female cardiologist who takes the same supplement, but food sources are still preferred. And a recent echocardiogram showed everything seems fine. (And surprised my PCP as I have high-ish cholesterol and can't tolerate statins. After reading the echo and calcium score results, he stopped lobbying for statins. Doctors know a lot but the human body remains an enigma, lol.)

Jump to this post

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

REPLY
@haroula

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

Jump to this post

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 ;-).

REPLY
@haroula

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

Jump to this post

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!

REPLY
@butterflywings

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!

Jump to this post

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!

REPLY
@kilh

@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

Jump to this post

I'm no expert on this stuff but, just thinking, isn't it a good idea to keep with a drug that seems to do what it's supposed to, if one has no side effects? That sounds like the optimal situation - an effective drug, for which the substitutes are problematic, hopefully doing no harm? Buy there might be good other reasons involved in the decision that need consideration too I realize.

REPLY
@callalloo

I'm no expert on this stuff but, just thinking, isn't it a good idea to keep with a drug that seems to do what it's supposed to, if one has no side effects? That sounds like the optimal situation - an effective drug, for which the substitutes are problematic, hopefully doing no harm? Buy there might be good other reasons involved in the decision that need consideration too I realize.

Jump to this post

@callalloo, @kilh has a complicated medical situation that makes returning to Tymlos a serious decision one way or the other. No way you would know that but just to explain.

REPLY
@windyshores

@callalloo, @kilh has a complicated medical situation that makes returning to Tymlos a serious decision one way or the other. No way you would know that but just to explain.

Jump to this post

Thanks.

REPLY

NSAIDS caused bisphosphonate failure in one study. Heads up as this might be true with other bisphosphonates. See article and study cited (with links) below. It caught my attention as a friend is on an injected bisphosphonate and, for a different issue, takes a lot of Aleve. The doctor never mentioned a connection though her DEXAs show zero improvement though she's now in year three.

"For women treated with clodronate, the bisphosphonate failed to reduce osteoporotic fracture risk in those who used NSAIDs (HR = 0.95; 95% CI, 0.65-1.41; P = .81), but did reduce the risk in those who did not receive NSAIDs (HR = 0.71; 95% CI, 0.58-0.89; P = .002)."

https://www.healio.com/news/endocrinology/20220616/nsaids-reduce-efficacy-of-clodronate-in-preventing-bone-loss-fractures?utm_source=selligent&utm_medium=email&utm_campaign=topicalert&M_BT=8019573958709

Potential Adverse Effect of Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) on Bisphosphonate Efficacy: An Exploratory Post Hoc Analysis From a Randomized Controlled Trial of Clodronate

https://asbmr.onlinelibrary.wiley.com/doi/10.1002/jbmr.4548
REPLY

Here's an excerpt of the study previously mentioned that noted the need for better prognostic protocol than DEXA reliance.

"However, half of patients with incident fractures have BMD value above the diagnostic threshold of osteoporosis defined as a T-score of -2.5 SD or more below the average value of young healthy women. Clearly there is a need for improvement in the identification of patients at risk for fracture."

https://pubmed.ncbi.nlm.nih.gov/15615078/
REPLY
Please sign in or register to post a reply.