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 🙂

@catharbert

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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Here is a link to the BoneLadies excellent blog where she compares the COMB and MOTS study which includes the melatonin listed by Catcando. I have always assumed that the melatonin makes a difference for the better with bone building because the body needs the quality of sleep to grow bone or maybe it is moot and the other supplements are what made the difference, impossible to tell in a combination study like this. But bone building is obviously a synergistic action of many supplements, hormones etc. so the study makes sense in mimicking real life.

The studies follow a novel combination of melatonin and other natural bone-aiding micronutrients including: strontium citrate, vitamins D3 and K2 etc. with each study having some difference in supplement. Obviously, this combination of supplements study has its pluses and minuses. Probably most importantly these are 2 studies on strontium citrate. A welcomed supplement study which is fairly rare in the research field.

Notice the links at the bottom of the blog link which will take you to the actual studies http://strontiumforbones.blogspot.com/2017/02/mots-and-comb-study-comparison.html

REPLY

Hello Kathleen and @catharbert . My bone supp has Strontium, the Ds and the Ks. But it doesn't have Boron which is VERY important at low doses under 20mg max, from what my research tells me. It's cheap so I may add it. My Strontium research says that Strontium atom is heavier than bone and it will replace bone w/ itself instead of bone and that it can alter bone density scans (DEXA). Have you come across any of this info? Thanks so much and many blessings, Sunnyflower

REPLY

Your information is not quite correct. Yes, strontium is heavier than calcium but not heavier than bone. No, strontium will not replace bone; strontium will be used to grow bone scaffolding just like calcium. Yes strontium is heavier than calcium and DXA scans that are gauged to measure calcium in bone will show about 10% denser than if only calcium was present, because strontium is heavier.

Bone is made from mainly collagen and calcium phosphate, a mineral that adds strength and hardens the framework. In your bones, calcium-sensing receptors are found on osteoblasts (cells that build new bone). Strontium kick-starts osteoblasts, but not as much as calcium does.

According to one source though, see citation below, a new version of calcium-sensing receptor has been identified in osteoblasts. And this sensor seems to be activated only by strontium. In other words, your body recognizes strontium and it uses it to build bone just as it uses calcium, to add strength to the bone matrix. It has been known for awhile that strontium activates calcium sensing receptors. If this new research is borne out, about a separate receptor for strontium, then that will be a big break thru in strontium use for osteoporosis.

We already know strontium occurs naturally in water and many foods; we know that the body recognizes it and uses it similarly to calcium in bone. If strontium has its own receptor then those who have said that in the past the body was subjected to strontium regularly and in much larger amounts than now will gain a valid talking point in its use for osteoporosis. But even if this new receptor is not borne out in further study, it does not change the fact that the known calcium receptors know and use strontium to make the bone stronger. Yes, they use calcium first, but they also use strontium.
https://www.algaecal.com/algaecal-ingredients/strontium/strontium-benefits/
Indeed, recent 3d visualizations from bone biopsies of strontium users show plate like healthy bone with good mineralization. See photo inserted here with a link to the research study
https://asbmr.onlinelibrary.wiley.com/doi/full/10.1359/jbmr.071012

REPLY
@kathleen1314

Your information is not quite correct. Yes, strontium is heavier than calcium but not heavier than bone. No, strontium will not replace bone; strontium will be used to grow bone scaffolding just like calcium. Yes strontium is heavier than calcium and DXA scans that are gauged to measure calcium in bone will show about 10% denser than if only calcium was present, because strontium is heavier.

Bone is made from mainly collagen and calcium phosphate, a mineral that adds strength and hardens the framework. In your bones, calcium-sensing receptors are found on osteoblasts (cells that build new bone). Strontium kick-starts osteoblasts, but not as much as calcium does.

According to one source though, see citation below, a new version of calcium-sensing receptor has been identified in osteoblasts. And this sensor seems to be activated only by strontium. In other words, your body recognizes strontium and it uses it to build bone just as it uses calcium, to add strength to the bone matrix. It has been known for awhile that strontium activates calcium sensing receptors. If this new research is borne out, about a separate receptor for strontium, then that will be a big break thru in strontium use for osteoporosis.

We already know strontium occurs naturally in water and many foods; we know that the body recognizes it and uses it similarly to calcium in bone. If strontium has its own receptor then those who have said that in the past the body was subjected to strontium regularly and in much larger amounts than now will gain a valid talking point in its use for osteoporosis. But even if this new receptor is not borne out in further study, it does not change the fact that the known calcium receptors know and use strontium to make the bone stronger. Yes, they use calcium first, but they also use strontium.
https://www.algaecal.com/algaecal-ingredients/strontium/strontium-benefits/
Indeed, recent 3d visualizations from bone biopsies of strontium users show plate like healthy bone with good mineralization. See photo inserted here with a link to the research study
https://asbmr.onlinelibrary.wiley.com/doi/full/10.1359/jbmr.071012

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Good info Kathleen!! There is so much info out there. I wonder why AlgaeCal doesn't have Boron in it? My New Chapter Bone Strength has Strontium, the Ds and Ks and Mags but not Boron so I'm going to add that supp as well. From what I've read, both sound equally important. I just read a medical journal by NIH on Boron. Yes, osteoclasts and osteoblasts, I remember them well from school. I don't think any of the osteoporosis meds aka bisphosphonates, do both rebuilding and removing. Maybe some day. Well take are and thanks again for the info!!! All the best, Sunnyflower

REPLY
@catharbert

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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@migizii My PCP actually referred me to a dietician for osteoporosis and when I met with the person, they gave me the strangest look and said if you’re not here about a diabetic diet, I can’t help you. Thus, I’ve been learning on my own ever since.

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@migizii

@migizii My PCP actually referred me to a dietician for osteoporosis and when I met with the person, they gave me the strangest look and said if you’re not here about a diabetic diet, I can’t help you. Thus, I’ve been learning on my own ever since.

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migzii, I am shocked that my new nutritionist knows so little about how to help me for my osteo! I think maybe my referral was about how to eat right now that I've lost 200# in the last few years (deliberately, needed it!). Unfortunately I did it on a very low calorie diet and only now just learned that low cal diets are the worst thing ever for osteo! Oy vei. Now I'm trying to reverse my osteo w/ foods and supps. Take good care, Sunnyflower @catharbert

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@sunnyflower

migzii, I am shocked that my new nutritionist knows so little about how to help me for my osteo! I think maybe my referral was about how to eat right now that I've lost 200# in the last few years (deliberately, needed it!). Unfortunately I did it on a very low calorie diet and only now just learned that low cal diets are the worst thing ever for osteo! Oy vei. Now I'm trying to reverse my osteo w/ foods and supps. Take good care, Sunnyflower @catharbert

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@sunnyflower I too am doing the best I can with diet. I read a while back that many people do not realize that protein is as important as calcium! People with osteoporosis should actually get more protein than the normal recommended amount. Bones are half protein.

I wish I was better at noting the source of things, but I do generally only give credence to real medical sources. I also read just in the last week that senior citizens generally are not getting enough protein and those who do have a lower chance of dementia! I have added Fairlife 2% milk to my diet. I did it initially because it is lactose-free and I recently developed lactose intolerance. After purchasing it I discovered that it also has more calcium and protein than typical 2% milk too. I try to drink a glass or two of that a day too. I did try a protein drink they produce too, it has 30% of the required protein, but it was a bit too sweet for me.
JK

REPLY
@contentandwell

@sunnyflower I too am doing the best I can with diet. I read a while back that many people do not realize that protein is as important as calcium! People with osteoporosis should actually get more protein than the normal recommended amount. Bones are half protein.

I wish I was better at noting the source of things, but I do generally only give credence to real medical sources. I also read just in the last week that senior citizens generally are not getting enough protein and those who do have a lower chance of dementia! I have added Fairlife 2% milk to my diet. I did it initially because it is lactose-free and I recently developed lactose intolerance. After purchasing it I discovered that it also has more calcium and protein than typical 2% milk too. I try to drink a glass or two of that a day too. I did try a protein drink they produce too, it has 30% of the required protein, but it was a bit too sweet for me.
JK

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Hello JK! What great info here! Glad you found out what to do and are doing it w/ your diet! I told my Endocrinologist today that my Rheumatologist who began me on Prednisone in the early 1990s and two of my Rheumatologists since then and three of my Endocrinologists since then never told me that I may not ever be able to get off it nor did any of them tell me to take calcium, D and/or what my diet should be. My sweet Endo now said that it wasn't only recently they understood about these nutrients and the rold they play. That's hard for me to believe. Now I am steroid dependent. My adrenal glands bit the dust. I lost 200# and didn't have any dairy for about 3 years!!!! And, I ate a very low 8-900 calorie diet which is the worst thing I could have done!!! I did however, eat proteing and ate fit. I just recently learned from my nutritionist that the vitamin Ds need fat to activate them to help with calcium absorption! I have been eating almost no fat either in the last few years. I can't believe it. Oh well, onward and forward! I'm doing it correctly now with my nutritionist whom, BTW, I asked for! Prayers and wishes for ZERO pain and peace for your soul, Sunnyflower @migzii

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@kathleen1314

Here is a link to the BoneLadies excellent blog where she compares the COMB and MOTS study which includes the melatonin listed by Catcando. I have always assumed that the melatonin makes a difference for the better with bone building because the body needs the quality of sleep to grow bone or maybe it is moot and the other supplements are what made the difference, impossible to tell in a combination study like this. But bone building is obviously a synergistic action of many supplements, hormones etc. so the study makes sense in mimicking real life.

The studies follow a novel combination of melatonin and other natural bone-aiding micronutrients including: strontium citrate, vitamins D3 and K2 etc. with each study having some difference in supplement. Obviously, this combination of supplements study has its pluses and minuses. Probably most importantly these are 2 studies on strontium citrate. A welcomed supplement study which is fairly rare in the research field.

Notice the links at the bottom of the blog link which will take you to the actual studies http://strontiumforbones.blogspot.com/2017/02/mots-and-comb-study-comparison.html

Jump to this post

Thank you Kathleen! My bone supp, New Chapter Bone Strength has the D3 and Ks plus strontium but not boron so I bought boron for cheap, and take it with the Bone Strength. I also just learned from my nutritionist that in order for vitamin D to help the calcium be absorbed, there needs to be fat in the diet preferably in the meal you are taking the supplement with. I never realized there was such a significant amount of the diet that does need to be fat butt since I have been dieting seriously for 3 years and have lost 200 pounds, I realized that I harmed myself terribly in regard to osteoporosis, by eating such a low-fat low-calorie diet. Hindsight is 20/20. Thank you very much for the links! Hope you are doing well and warmest wishes, Sunny flower. 😊. @catahrbert

REPLY
@sunnyflower

Thank you Kathleen! My bone supp, New Chapter Bone Strength has the D3 and Ks plus strontium but not boron so I bought boron for cheap, and take it with the Bone Strength. I also just learned from my nutritionist that in order for vitamin D to help the calcium be absorbed, there needs to be fat in the diet preferably in the meal you are taking the supplement with. I never realized there was such a significant amount of the diet that does need to be fat butt since I have been dieting seriously for 3 years and have lost 200 pounds, I realized that I harmed myself terribly in regard to osteoporosis, by eating such a low-fat low-calorie diet. Hindsight is 20/20. Thank you very much for the links! Hope you are doing well and warmest wishes, Sunny flower. 😊. @catahrbert

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Sunnyflower, the strontium in New Chapter Bone Strength is useless because it is combined with calcium. The body seems to always choose calcium over strontium if taken together, at least that is what current research suggests. So it is best to take calcium and strontium apart from one another. Strontium late at night is usually best. It does bother me that the research for New Chapter seems to be flawed.

I have never understood the concern about cutting nutritious fat out of the diet. The body needs fat. In fact if you add fat to carbos the body is less likely to store carbohydrates as fat…so lots of butter on baked potatoes please.

When my husband decided he needed to lost 40 lbs, he bought a blood glucose monitoring device to see what raised his glucose levels. He then culled those items which were almost all carbos, especially potatoes, rice and bakery items from his diet. Then he added lots of fat and protein. The lbs melted away. After he lost the weight and started adding items bk into his diet he made sure to keep lots of fat in the equation because the fat slows down the glucose rise. Bottom line eating fats in combination with carbohydrates can affect how quickly the carbohydrates are absorbed in the digestive tract, potentially leading to a slower, more sustained rise in blood glucose levels.

Thanks for the information about boron. I eat lots of nuts, raisins, beets. Still, after reading the research I think that 3mg of boron would be prudent for especially hormone regulation during menopause.

Warmest wishes to you also, Sunnyflower.

REPLY
@kathleen1314

Sunnyflower, the strontium in New Chapter Bone Strength is useless because it is combined with calcium. The body seems to always choose calcium over strontium if taken together, at least that is what current research suggests. So it is best to take calcium and strontium apart from one another. Strontium late at night is usually best. It does bother me that the research for New Chapter seems to be flawed.

I have never understood the concern about cutting nutritious fat out of the diet. The body needs fat. In fact if you add fat to carbos the body is less likely to store carbohydrates as fat…so lots of butter on baked potatoes please.

When my husband decided he needed to lost 40 lbs, he bought a blood glucose monitoring device to see what raised his glucose levels. He then culled those items which were almost all carbos, especially potatoes, rice and bakery items from his diet. Then he added lots of fat and protein. The lbs melted away. After he lost the weight and started adding items bk into his diet he made sure to keep lots of fat in the equation because the fat slows down the glucose rise. Bottom line eating fats in combination with carbohydrates can affect how quickly the carbohydrates are absorbed in the digestive tract, potentially leading to a slower, more sustained rise in blood glucose levels.

Thanks for the information about boron. I eat lots of nuts, raisins, beets. Still, after reading the research I think that 3mg of boron would be prudent for especially hormone regulation during menopause.

Warmest wishes to you also, Sunnyflower.

Jump to this post

Thanks Kathleen! This is very good information. It is overwhelming because that means I have to do research again to find a different bone supplement. Do you know if it is okay to take the Boron with the bone supplement? I did read that the strontium atom is heavier than bone so that it will in effect replace bone, not help bone grow. Any comments on this? My osteoporosis has been severe for many years and I've already had three spontaneous pelvic fractures and one rib fracture besides other little bones. I have been on steroids daily since the early 1990s; at first it was megadoses by IVs and 60mg oral tapers but now it's 10 mg a day. I went on a very low calorie diet and have lost about 200 lbs but I had very little fat in my diet so Just Having learned that vitamin D needs fat in order to help calcium be absorbed, I have started to add 1/4 of an avocado to the meal that I do not get fat in.

I saw a guy on Dr. Oz who went around the world trying to find out who were the most cardiofit. I think he ended up with a country in South America and listen to this! They slept 9 hours a night, 90% of the time they were awake they were moving and, now sit down, a very, very high percentage of their diet is complex carbohydrates! I believe they had plantains at every meal whether boiled, steamed, baked or fried. So that kind of blows away the keto diet yes? Thanks again for such great information and I hope you're doing well. Blessings, Sunny

REPLY
@sunnyflower

Thanks Kathleen! This is very good information. It is overwhelming because that means I have to do research again to find a different bone supplement. Do you know if it is okay to take the Boron with the bone supplement? I did read that the strontium atom is heavier than bone so that it will in effect replace bone, not help bone grow. Any comments on this? My osteoporosis has been severe for many years and I've already had three spontaneous pelvic fractures and one rib fracture besides other little bones. I have been on steroids daily since the early 1990s; at first it was megadoses by IVs and 60mg oral tapers but now it's 10 mg a day. I went on a very low calorie diet and have lost about 200 lbs but I had very little fat in my diet so Just Having learned that vitamin D needs fat in order to help calcium be absorbed, I have started to add 1/4 of an avocado to the meal that I do not get fat in.

I saw a guy on Dr. Oz who went around the world trying to find out who were the most cardiofit. I think he ended up with a country in South America and listen to this! They slept 9 hours a night, 90% of the time they were awake they were moving and, now sit down, a very, very high percentage of their diet is complex carbohydrates! I believe they had plantains at every meal whether boiled, steamed, baked or fried. So that kind of blows away the keto diet yes? Thanks again for such great information and I hope you're doing well. Blessings, Sunny

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@sunnyflower The research I did on strontium said that srontium caltrate is the one you want to build bone . Take it at least 2 hrs from calcium as they both do the same thing and if you take together the strontium wont be affective so take 2 hrs apart

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