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.

@windyshores

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.

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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.

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@ppat4pr

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?

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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."

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@windyshores

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.

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Thanks. I love V-8 so that's good to know.

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@mariegroh

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."

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@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....)

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@windyshores

@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....)

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Thank you so much for your information. I really appreciate it, and will re-consider my decision to stay off it.

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I read that the rate of osteonecrosis is higher, and growing, with the injected or infused bisphosphonates and Prolia. The article didn't cite a study or I'd add the link. But conceptually it makes sense in the same way that injected antibiotics hit the body faster than ingested ones. And the fewer injections per year, the greater the chemical/med load per injection. I understand the convenience of getting a big dose of something less frequently but, personally, find the idea a tad alarming unless there is a totally 100% safe readily available antidote to whatever is injected in case of a problem. But that's just me.

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@callalloo

I read that the rate of osteonecrosis is higher, and growing, with the injected or infused bisphosphonates and Prolia. The article didn't cite a study or I'd add the link. But conceptually it makes sense in the same way that injected antibiotics hit the body faster than ingested ones. And the fewer injections per year, the greater the chemical/med load per injection. I understand the convenience of getting a big dose of something less frequently but, personally, find the idea a tad alarming unless there is a totally 100% safe readily available antidote to whatever is injected in case of a problem. But that's just me.

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Many people cannot tolerate oral bisphosphonates due to GERD. My doc mentioned doing a low dose of Reclast first, but that is for maintenance not bone growth. I think the dose of Zometa that stage 4 cancer patients get is higher than that for osteoporosis, and most of the osteonecrosis of the jaw happens with those.

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@windyshores

Many people cannot tolerate oral bisphosphonates due to GERD. My doc mentioned doing a low dose of Reclast first, but that is for maintenance not bone growth. I think the dose of Zometa that stage 4 cancer patients get is higher than that for osteoporosis, and most of the osteonecrosis of the jaw happens with those.

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The GERD thing is a problem, I know. Injections avoid esophageal irritation or worse but there's something about a 6-month dose of something injected into the body that, for me, is a concern. I'm the kind of person who'd rather a little inconvenience and the kind of self-administration gadget that your osteoporosis drug uses.

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@callalloo

The GERD thing is a problem, I know. Injections avoid esophageal irritation or worse but there's something about a 6-month dose of something injected into the body that, for me, is a concern. I'm the kind of person who'd rather a little inconvenience and the kind of self-administration gadget that your osteoporosis drug uses.

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The problem is that my self-administration gadget (Tymlos pen) needs to be followed by something else, at least initially and I do not want Prolia. I am hoping to do Evenity but that needs to be followed by something else too, again, at least initially. My hope is to do natural methods during the expected breaks in Reclast.

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@callalloo

The GERD thing is a problem, I know. Injections avoid esophageal irritation or worse but there's something about a 6-month dose of something injected into the body that, for me, is a concern. I'm the kind of person who'd rather a little inconvenience and the kind of self-administration gadget that your osteoporosis drug uses.

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Oral bisphosphonates can have (for some patients) side effects that are more than "a little inconvenient." A friend ended up with bad esophagitis which took weeks to resolve after stopping the medication.

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