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Significant osteoporosis: I need a bone plan
60 y/o , fit and active (I thought) but my first bone scan showed osteoporosis in spine (-3.3). Want to start Evenity, Tyblos, or Forteo. Its really the first health issue I've had in my life, and I'm kind of stumped. How can I find reliable third party research into their relative risks & efficacy -- only research I can find online is done by the companies themselves.
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So in consulting again with my Dr I misunderstood what she said, currently she is only recommending Forteo.
@lorkay I would be interested if you started any medication. I finally made the decision to start back on Tymlos. But start slowly with 2 clicks and see how far I can go without any side effects. So far all good. Hope you are fine. KLH
Hello. I sound similar to your case and also @heyhey including Depression. I also need help. I’m -3.6 with a -4 at my L4-5 and hip -2.7.
They recommend tymlos for me but my biggest question is if this grows new bone increases density is it ACTUALLY good and flexible bone?!
If it’s not Strong flexible new Bone, isn’t that More fracture risk even if you have increased bone density?
And even if it is good bone and not at increased fracture risk , once you get off tymlos you have to go on a bisphosphonate type to keep it due to reversibility of the anabolics.
So then, from my understanding, that bone will definitely become
Brittle (because the drug causes the old bone- that’s naturally SUPPOSED TO BE replaced - to stay- but it is old/ brittle and more risk of fractures.
Vitamin k mk-4 of 45 mg / daily used in Japan apparently instead of bisphosphonates can significantly reduce FRACTURE risk even though bone mineral density does not go up. Has anyone done this vitamin K large 45 mg daily? Doctors will think it can cause extra clotting but the functional doctor said no , once we get enough K for clotting it moves on to help bones and other things in the body; and that It doesn’t increases clot risk. So I’d ask for coagulation labs to be safe and ask your doc first.
Re HRT I heard A Osteoporosis speaker say once we’re 5 to 7 years past menopause, our estrogen receptors have basically dried up and it really won’t respond to HRT anymore. 🧐 true?
❤️👉🏼 Would love to hear from those who’ve done Forteo tymlos and vit K 45 mg and reduced fracture risk.
I don’t want to go on Tymlos and then bisph. Or Reclast if I’m just going to end up with higher BMD but more brittle, higher fracture risk bones?!!
I believe it is 45mcg, not mg for that type o Vit K. I have been taking that.
In talking about good and flexible bone, I'm wondering if anyone has managed to get a Traebecular Bone Score, TBS, which is a "bone mineral density (BMD) -independent predictor of fracture risk." (A Meta-Analysis of Trabecular Bone Score in Fracture Risk Prediction and Its Relationship to FRAX) in Journal of Bone and Mineral Research, Vol.31, No.5, May 2016, pp940-948). DXA scans measure bone quantity, not bone quality. From what I've read, two bones can have the same DXA score, but, when subjected to pressure, a brittle bone will break, a flexible bone will not.
I read a study in which TBS tests were done on particpants with DXA scores that indicated osteoporosis, but with the TBS test, a significant number were found not to have osteoporosis. I will try to find the reference for that.
It's frustrating because I don't think TBS tests are available in our state.
A good resource for learning about osteoporosis (and other) drugs is Worst Pills, Best Pills. You can get some information for free, but subscription rates are nominal.
Since diagnosis, I'm taking Boron, Vitamin K, Silica and L. Reuteri in addition to Calcium Citrate and Magnesium, Vitamin D, strength train (special exercises for osteoporosis) three times a week and walk three times a week, in addition to using a Whole Body Vibration Exercise machine (with caution). I also take alendronate once a week. I agree, the diagnosis is depressing. I wish I had taken better care of my bones when I was younger! Here's to a fracture free New Year.
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5 ReactionsTymlos and Forteo grow quality bone. They do not suppress turnover. In fact, I have been told, even if bone density does not increase, bone quality does. Some of us have painful fractures (despite good deiet, supplements and exercise) after waiting too long. At that point, I did not overthink the decision to try Tymlos!
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3 ReactionsJust as an example of what can go wrong with bone health medications, I was put on Prolia for osteoporosis and got rashes and severe bone pain after both of the two injections I received. Switched to Tymlos and wasn't monitored as often as I should have been after the first four months resulting in hypercalcemia, hospitalized and told I could have died as bad as the blood chemistry was. After that I was given an infusion of Reclast that resulted in severe body aching, swollen, red, non-functional hand and migraines for 5 days. After all this, I'm just trying to eat well, take calcium and vitamin D supplements to maintain any bone health. A previous bone health doctor mentioned putting me on Forteo but it never happened.
I am avoiding Prolia because of the drop in bone density when you go off. I think a lot of your problems could have been averted with better advice on calcium intake, better monitoring, and starting at a lower dose. I started Tymlos at 2 out of 8 clicks of the pen and am still not up to full dose and my doc is fine with it. Ditto Reclast. My doc will give me only 1mg and test to see if that is working, after my Tymlos.
I went 14 years with osteoporosis, with no osteoporotic fractures, but when I did finally fracture it was 3 vertebrae and so painful and for a few months I lost my independence. It was from one stupid movement. Just make sure you don't wait as long as I did.
It sounds like you need a better doctor, rather than avoiding meds. But I don't know your DEXA scores. If insurance was paying for Tymlos I assume not good.
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1 ReactionHi there, I feel you. Just turned 59, fitness instructor and have a -3.0 on this end. Broke a hip last Jan tripping over Xmas gift ( ROOMBA ) and 2 toes after that. Guess those were the red flags. Doc says Tymlos is the Tesla of all treatments. $$$$$ Very grateful insurance pays for it. Small mosquito size bumps after injections started 28 days in. Tymlos says if thats your only side effect your are doing great. Needle is so easy to use, just nerve racking as this is my first illness as well. I am beyond active. I'm the woman mowing the lawn, climbing trees to string lights, moving heavy patio furniture, on the roof kind active, besides teaching 13 fitness classes a week. I was mortified to find out next fall could fracture my spine. Trying not to live in fear is the goal, but it's a daily battle in own head as again I am so active. Was told all that must stop, no bike riding , hiking, jumping, no deep tissue massages on and on and on. Taking loads of supplements recommended by NaturalPath Doc, Just praying for a good outcome. Hugs
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2 ReactionsHello WindyShores, It was definitely negligence on the part of the "bone health" people who were supposed to be monitoring me while on the Tymlos. It was about five months and after massive spinal surgery that they finally rechecked the blood chemistry even though I had an elevated calcium of 13.3 and other crises during the hospital stay for the surgery. The neurosurgeon set me up with the negligent bone health group and then put the blame for the mess on me ignoring my request to refer me to a different endocrinologist. It has been exactly three years since the surgery and I'm still trying to get help to monitor bone health with an elevated N-Telopeptide level that needs to be resolved. Normal is 6.2 - 19.0 uM BCE. My last three values were 33.2 uM BCE, 25.5, back up to 29.9. If anyone has any knowledge about elevated N-Telopeptide values, I would dearly love to hear about it.
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