Treating Osteoporosis: What works for you?

@ppat4pr and @mariegroh this article is actually very reassuring about osteonecrosis of the jaw and Fosamax, so I hope folks read it.

Just want to add that I recently posted a study that said the incidence of osteonecrosis of the jaw is one in ten thousand for the usual dose. For stage 4 cancer patients with metastasis to the bones, the statistic is one in ten. The risk is less with oral meds like Fosamax versus injected Reclast or Zometa.

My doc says most cases are among stage 4 metastatic cancer patients who take larger doses (Zometa usually). Many other patients seem to be taking Reclast or Fosamax or other biphosphonates for more than 10 years, which would increase risk.

I did not take a biphosphonate with letrozole and ended up with three new spinal fractures. My bones got much worse without. I didn't decline the drug. I was unable to take it and my doc did not want me to try again because at the time it was thought to exacerbate my afib.

I wish I could have taken it!

@ppat4pr everyone on here wants to help and the warning from @mariegroh is something to keep in mind long term. But it should not scare you in terms of 5 years on Fosamax to counteract the very real risk to bones while on letrozole. (I am assuming you are not stage 4 but would say the same even if you are....)

Fosamax is a Bisphosphonate..
https://www.webmd.com/osteoporosis/news/20090101/fosamax-higher-risk-of-jawbone-death#:~:text=Jan.%202%2C%202009%20--%20After%20having%20teeth%20pulled%2C,tooth%20extraction%20patients%20not%20taking%20Fosamax%20developed%20osteonecrosis.
From the article: ""Here at the USC School of Dentistry, we're getting two or three new patients a week that have bisphosphonate-related osteonecrosis of the jaw -- and I know we're not the only ones seeing it," Sedghizadeh says in a news release."

ps @callalloo I also take potassium in the form of low sodium V-8 for muscle cramps AND afib. The cans have something like 1250 mg and the large plastic bottles have 850mg for 8 oz.- a lot of potassium! The afib forum told me about this a few years ago. No more cramps.

My endocrinologist wants me on Fosamax since I am taking Letrozole for another year (5 in all) for breast cancer. My general practitioner agrees. I was on Fosamax previously & had jaw pain. Endocrinologist says Fosamax does not affect jaw. Anyone else have this problem?

So 25mcg is equal to 1,000 IU. I take 3,000 IU but only because Tymlos "eats up" D3. I raised my D levels years ago by taking 3,000 but then did maintenance with 2,000 IU, which would be 50mcg.

McCormick told me to take 45 mcg of K2 (MK-7). But here is Margaret Martin's take:

Vitamin K2 MK7 dosage recommendation is 150 to 180 µg per day. This is based on the dosage used in most recent research studies.
Recommended daily dosage for Vitamin K2 MK4 is 45 mg in Asia and Japan. Other jurisdictions do not provide guidance.

I am a little nervous about overdoing K2 but need to take MK4 as well.

It was a typo. The Alive! Bone Support daily dose of 4 tablets 1300 gm of calcium (100% of DV) from red algae, 100 mcg of vitamin D3 (500% of DV). And 150 mcg of vitamin K2. I'm fairly conservative about vitamins and am sure there are supplements that have larger amounts of these items but as long as my blood work shows decent levels of calcium and D, I try to rely on diet for the basics we need.

@hlp123 I have suggested the Whole Body Approach to Osteoporosis by McCormick here and to friends. I think it is helpful. You can get it from a library before purchasing!

@callalloo that is a low level of D3. Did you mean 1,000? I take 3,000 units daily, 45mcg K2, 800mg calcium split in two, and 300-600mg magnesium two hours away from any calcium.

@hlp123 I have suggested the Whole Body Approach to Osteoporosis by McCormick here and to friends. I think it is helpful. You can get it from a library before purchasing!

@callalloo that is a low level of D3. Did you mean 1,000? I take 3,000 units daily, 45mcg K2, 800mg calcium split in two, and 300-600mg magnesium two hours away from any calcium.

I'm no expert at all on osteopenia/osteoporosis but have been taking the Alive! Bone Support (formerly called Bone Formula) for several years after buying it for a friend healing from a broken neck. A DEXA last year was almost identical to one six years earlier so it's probably helping. After comparing the two DEXAs, my PCP stopped recommending I consider taking Fosamax at least.

The 4-tablet dose contains 1300 mg calcium from red algae, 100 mg vitamin D3, 150 mg vitamin K2 and magnesium and some fruit, vegetable and greens stuff and an insignificant 9 mg of strontium also from the red algae.

I also take orthosilicic acid because a few studies I read noted its role in bone renewal (brand name Bio-Sil) and Biotin Forte (3,000 mcg biotin and 30 mg zinc). The latter two also help hair, skin and nails in theory. I have thick hair that seems to be growing faster since adding the Bio-Sil. I'm not sure that that's a desired side effect but it's interesting. And, to me, is a reminder that the body's innate propensity is to regenerate when the environment supports it in ways we don't yet fully understand.

But again I'm no expert about this stuff. Am just taking stuff that peer-reviewed studies suggest are important in bone health and renewal.

@sprout I would not comment on your situation without knowing your DEXA scores and whether you have fractured. If your score is lower than -3.0 for instance I would discuss with you the benefits of medications and risk of pain and disability from fractures. If your DEXA is, say, -2.6, that would be a different story. I have recommended The Whole Body Approach to Osteoporosis by McCormick, Lani Simpson MD's Facebook and website, and Margaret Martin's melioguide site for exercises. For some of us, medications are unavoidable to avoid disability and they can be life changing but some do have significant side effects. I addressed side effects of Tymlos by starting with a low dose and moving up slowly. Good luck!