Bisphosphonates or Not? Both No Win

Posted by sunnyflower @sunnyflower, Sep 15, 2020

Hello. I am Sunnyflower.
I've been in the Neuropathy group for a few months and am still learning how to get around properly in Connect. I'm making progress!! I'm 67. I have a myriad of diseases, several of them painful. Now my most urgent decision is based upon my recent bone density scan results. I've had "severe" osteoporosis for about 4+ years. I've had several spontaneous fractures (3-pelvic, 1-rib and other smaller bones) from long time steroid use for two of my many diseases; lung and auto-immune diseases-painful inflammation. Three of my Endocrinologists over the years have wanted me to take Bisphosphonates for years but I'm so freaked out by the "rare" potential side-effects. Rare doesn't mean a lot to me since 3 of my diseases/conditions are rare: diffuse minute meningothelialomatosis, brachial artery stenosis and nutcracker's esophagus.

My recent bone density scan showed my spine bones are 13% worse and my hip, 14% worse. Anything more than a 2% change is considered significant. Ug. The "rare" serious side effects, femur fractures (can be both at the same time from just standing) and femur tumor (can't recall or find whether or not that would be cancerous). Then, the not so serious side-effects, "debilitating" bone/muscle/joint pain, flu-like symptoms, stomach upset/pain etc. is also freaking me out b/c I'm already in so much pain I can't imagine more. Then, if you have any of these unwanted side-effects, they may stay w/ you for the duration of the medication which could be 3 or 6 months or 1 year and then start over! I know I can't take that yet, more fractures would be awful and a huge hardship on my husband and I would likely have to have care until I heal.

I'm sure you already know everything I've said about Bisphosphonates. I can't wait to meet you and am looking forward to hearing your stories. I'm a woman of faith and it is solely the comfort, peace of God through Christ (Philippians 4:7) and His everpresence that gets me through daily. For that I'm eternally grateful! We all walk through many fires here.

Many blessings and warmest regards, Sunnyflower 🙂

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

@sunnyflower

Please excuse my many typos!

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@sunnyflower No problem we all do this from time to time I'm guilty for sure

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@sunnyflower

Hi migizii, was it you I just told that my nutritionist told me to take 5g of fat w/ the supplements b/c the fat enables the vit Ds to help the calcium do it's thing? Avacado, teaspoon of oil, something like that. I take New Chapter Bone Strength which has all the Ds and Ks and, Strontium. It's a plant based algae calcium which is easier to digest if I'm understanding it correcty. Take good care and warm regards, Sunnyflower

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Hi sunnyflower, it wasn’t me (migizii), but thanks for the advice! I usually take my morning calcium an vitamin d with full fat organic plain yogurt, so I’m doing well there. I usually have something with Virgin olive oil at dinner, so I think most of the time it’s helping - but this will certainly serve as an excellent reminder to do this as I seem to have difficulty holding onto calcium sometimes. Take care😊

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@kathleen1314

sunnyflower...that strontium will not have any effect...the body ignores strontium when calcium is available...the bodies' calcium receptor also senses strontium but always goes with calcium if it has the choice...that is why strontium users take strontium at night when there is little or no chance of any calcium product taking precedence over the strontium...so sorry you are taking calcium and the strontium you take with it is being eliminated thru your kidneys and not being used in your bones...this can be changed by just taking a strontium supplement at night...AOR makes a good one which is monitored by the great Canadian health care laws on supplements.ha or any strontium citrate will probably work...I just like the comfort of Canada looking over my shoulder

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Hi mcchesney (Kathleen??) Thanks so much for the great information! What about Boron? It sounds like that is an absolute to get into my supplement regime? May I ask where or how you got your education? Are you a medical professional? I worked in healthcare as a Medical Assistant and Health Unit Coordinator for 20 years. My career goal was to become a Physican Assistant so I got a lot of extra trainning. Then I became too ill. I can't seem to get in enough research/education in this field. I LOVE to learn! Many blessings, Sunnyflower

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@migizii

Hi sunnyflower, it wasn’t me (migizii), but thanks for the advice! I usually take my morning calcium an vitamin d with full fat organic plain yogurt, so I’m doing well there. I usually have something with Virgin olive oil at dinner, so I think most of the time it’s helping - but this will certainly serve as an excellent reminder to do this as I seem to have difficulty holding onto calcium sometimes. Take care😊

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Hi migizii, sounds like you are doing everything right! I 'm still learning. Take care, Sunnyflower

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@sunnyflower

Hi mcchesney (Kathleen??) Thanks so much for the great information! What about Boron? It sounds like that is an absolute to get into my supplement regime? May I ask where or how you got your education? Are you a medical professional? I worked in healthcare as a Medical Assistant and Health Unit Coordinator for 20 years. My career goal was to become a Physican Assistant so I got a lot of extra trainning. Then I became too ill. I can't seem to get in enough research/education in this field. I LOVE to learn! Many blessings, Sunnyflower

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Hi Sunnyflower....I am still on the fence about boron supplements...I take dietary amounts that should fill my bone needs...but boron is something which I am researching plus, collagen and silicon...because quality of bone is just as important as bone density, especially it seems in the femoral bone....no, no medical degree; lots of doctors in the family...ha, most of them are the "c" level students in the family; My training has been in research and teaching.

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Boron often comes up in the discussions about osteoporosis. I posted this in another discussion where members were asking questions about boron.

This article provides a great overview of evidence. "Boron supplementation cannot be recommended on the basis of current research. Its basic role in metabolism of bone and the reproductive system remains unclear."
– Boron Supplementation for Low Bone Density and Osteoarthritis (2002) https://www.reliasmedia.com/articles/118545-boron-supplementation-for-low-bone-density-and-osteoarthritis

More recent info here:
– Brains, Bones, and Boron https://www.healthline.com/health/brains-bones-boron
"While boron supplements have been considered as a possible treatment for people with arthritis, more clinical evidence is needed to support this claim.
Boron is considered safe for most people, but large amounts can be harmful. There also isn’t data regarding a safe level for children younger than 1 year old. Its safety hasn’t been studied in pregnant women.
It’s important that you talk with your doctor before taking supplements. It’s unlikely that boron supplements are necessary. Most experts recommend increasing intake through dietary sources like fruits and vegetables before considering supplements.
If you don’t want to take additional boron supplements, eating foods that contain boron, like prunes, raisins, dried apricots, or avocados, can help increase boron levels."

– NIH Medline Plus: Boron https://medlineplus.gov/druginfo/natural/894.html
"When taken by mouth: Boron is LIKELY SAFE when taken by mouth in doses that don't exceed 20 mg per day. Boron is POSSIBLY UNSAFE when taken by mouth in higher doses. There is some concern that doses over 20 mg per day might harm a man's ability to father a child. Large quantities of boron can also cause poisoning. Signs of poisoning include skin inflammation and peeling, irritability, tremors, convulsions, weakness, headaches, depression, diarrhea, vomiting, and other symptoms."
"Hormone-sensitive condition such as breast cancer, uterine cancer, ovarian cancer, endometriosis, or uterine fibroids: Boron might act like estrogen. If you have any condition that might be made worse by exposure to estrogen, avoid supplemental boron or high amounts of boron from foods."

As always, please consult with your medical provider before taking supplements.

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@colleenyoung

Boron often comes up in the discussions about osteoporosis. I posted this in another discussion where members were asking questions about boron.

This article provides a great overview of evidence. "Boron supplementation cannot be recommended on the basis of current research. Its basic role in metabolism of bone and the reproductive system remains unclear."
– Boron Supplementation for Low Bone Density and Osteoarthritis (2002) https://www.reliasmedia.com/articles/118545-boron-supplementation-for-low-bone-density-and-osteoarthritis

More recent info here:
– Brains, Bones, and Boron https://www.healthline.com/health/brains-bones-boron
"While boron supplements have been considered as a possible treatment for people with arthritis, more clinical evidence is needed to support this claim.
Boron is considered safe for most people, but large amounts can be harmful. There also isn’t data regarding a safe level for children younger than 1 year old. Its safety hasn’t been studied in pregnant women.
It’s important that you talk with your doctor before taking supplements. It’s unlikely that boron supplements are necessary. Most experts recommend increasing intake through dietary sources like fruits and vegetables before considering supplements.
If you don’t want to take additional boron supplements, eating foods that contain boron, like prunes, raisins, dried apricots, or avocados, can help increase boron levels."

– NIH Medline Plus: Boron https://medlineplus.gov/druginfo/natural/894.html
"When taken by mouth: Boron is LIKELY SAFE when taken by mouth in doses that don't exceed 20 mg per day. Boron is POSSIBLY UNSAFE when taken by mouth in higher doses. There is some concern that doses over 20 mg per day might harm a man's ability to father a child. Large quantities of boron can also cause poisoning. Signs of poisoning include skin inflammation and peeling, irritability, tremors, convulsions, weakness, headaches, depression, diarrhea, vomiting, and other symptoms."
"Hormone-sensitive condition such as breast cancer, uterine cancer, ovarian cancer, endometriosis, or uterine fibroids: Boron might act like estrogen. If you have any condition that might be made worse by exposure to estrogen, avoid supplemental boron or high amounts of boron from foods."

As always, please consult with your medical provider before taking supplements.

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Hi Colleen, hope this finds you and yours doing well. Thanks for the articles! The 2nd one refers to arthritis /joints which I have that disease too.

In regards to Boron for bones, yes, I 've read the same but also much more good in safe doses. I am going to add only 3mg to my bone supps.

I appreciate you addressing this and including the links.

Warmest regards, Sunny

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@kathleen1314

Hi Sunnyflower....I am still on the fence about boron supplements...I take dietary amounts that should fill my bone needs...but boron is something which I am researching plus, collagen and silicon...because quality of bone is just as important as bone density, especially it seems in the femoral bone....no, no medical degree; lots of doctors in the family...ha, most of them are the "c" level students in the family; My training has been in research and teaching.

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Thanks Kathleen. Please let me know what you find. I think the 3mg Boron, which is what most bone supps have, can't harm since studies show that up to 20mg is ok

I eat no leafy greens but take a super green food supp..

The Canadian bone supp AOR, is animal based calcium. I'm under the understanding that plant based is easier to digest.

I may switch my Dannon Lite and Fit yogurt to one that has fat in it to assist vit D to do its work assisting calcium absorption. My nutritionist told me that I need 5g of fat at the meal I take my bone supps. I have very little fat in my diet but do eat a lot of salmon (fresh Alaskan King) for dinner.

Thanks so much and I hope you have a blessed day, Sunnyflower. 😊

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@migizii

Hi sunnyflower, it wasn’t me (migizii), but thanks for the advice! I usually take my morning calcium an vitamin d with full fat organic plain yogurt, so I’m doing well there. I usually have something with Virgin olive oil at dinner, so I think most of the time it’s helping - but this will certainly serve as an excellent reminder to do this as I seem to have difficulty holding onto calcium sometimes. Take care😊

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I am very disappointed in doctors' who fail to sufficiently explain how osteoporosis works and how to take calcium. it was a couple of months after I was diagnosed before I discovered that the body can only use 300 mg of calcium at a time. Any more than 300 mg will be flushed out in urine. No one tells us about boron or any of the other supplements. Tums have 300 mg of calcium in every tablet. My latest discovery (on this list? I don't remember) is that melatonin helps build new bone. I searched on Medline and indeed there are a number of articles on this topic. My endocrinologist has a dietician that I guess he refers his diabetic patients to. Why does he not refer his osteoporosis patients to her? Maybe she doesn't treat osteoporosis patients?? I had hoped to find one who would know all these well kept secrets and help me develop a diet specific to my needs. No luck with that.

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Cathy, amen, amen, amen!!!!!!! Before I got osteo, my Rheumatologists had me on Prednisone. Before I took it daily, I was on IV and then 60mg tapers for lung problems so, a lot of steroid for many years! He never told me to take Calcium that I can recall. It was years later I learned I should and that was after 3 pelvic and one rib fractures!!!!!! Too Late!!! Now I have a sweet female Endocrinologist but even her, and the one I had before her, didn't help me or advise me regarding osteoporosis prevention. I'm sick about it!!!!!!!!!!! I have so many other medical problems I've been dealing with over the years including many illnesses and hospitalizations etc., a zillion diagnostics, surgeries, doctor appointments etc. that somehow, I neglected myself in regard to protecting myself and prevention like foods and supplements. I was too busy addressing my organs and glands that were harmed by my toxic meds. How does this happen? There, I feel much better now! Not! But thankful I have support here with great people like you! Thank you!!! @migizii Wow, I never really got that out before LOL! Take care girls, Sunnyflower

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