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 | @sunnyflower | Dec 5, 2020

In reply to @kathleen1314 "sunnyflower...that strontium will not have any effect...the body ignores strontium when calcium is available...the bodies' calcium..." + (show)

Hello Kathleen, I am so far behind on messages oh, please forgive. I think I already told you this but I'm not sure but I tried to strontium and my stomach won't tolerate it especially on an empty stomach. So I have this bottle sitting here that's almost full and don't know what to do. I am taking the aor orthobone Ultra. Any suggestions? Thank you very much, and I hope you're doing well, Sunny

mcchesney | @kathleen1314 | Dec 5, 2020

Well, you can take it with anything that doesn't have calcium in it .....just because the body will ignore the strontium and just take up the calcium. So just pick a food without calcium and eat with it. Hope that works and helps. 🙂

sunnyflower | @sunnyflower | Dec 5, 2020

In reply to @kathleen1314 "Well, you can take it with anything that doesn't have calcium in it .....just because the..." + (show)

Hi Kathleen, thx for getting back to me. I knew to take it 2 hours before or after calcium but then saw it should be on an empty stomach. It still upset my stomach taking it with food but am willing to give it another try. Hope you are doing as well as possible. Warmest regards, Sunnyflower

flmargie | @flmargie | Aug 30, 2021

In reply to @kathleen1314 "Is it possible that you mean strontium citrate Lioness?" + (show)

I am new today reading your very informative responses. I am age 78 with osteoporosis porous needing help. I have fractured jaw and cannot use any of the usual meds. I stumbled on Strontium citrate as a possible help. So am learning and liking what you guys are telling me
I guess I mistook Strontium Citrate with Strontium caltrate when I read referrals to Lioness. I am so happy to have found this wonderful Mayo Clinic Connect!

justdiagnosed | @justdiagnosed | Aug 31, 2021

In reply to @kathleen1314 "Sunny here are list after list of research done on different forms of strontium https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/strontium-studies-and-research-articles/ https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/strontium-does-it-prevent-fractures-research-articles-personal-stories/..." + (show)

@kathleen1314

Sunny here are list after list of research done on different forms of strontium https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/strontium-studies-and-research-articles/ https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/strontium-does-it-prevent-fractures-research-articles-personal-stories/

Firstly, Strontium citrate has Never been associated with heart attacks or blood clots...That is strontium Ranelate, a man made drug.
Strontium citrate is found in seafood, water and in any plant grown in dirt containing strontium. Strontium is a naturally occurring mineral and is main active ingredient in Sensodyne toothpaste etc, etc, etc

Here are the three reasons that your article says not to take any strontium: 1. It will cause your DXA to read about 10% higher 2. Strontium is a supplement that is not regulated by the FDA.... 3. Strontium Ranelate not strontium citrate was tied by a survey in Europe to heart attacks, strokes and skin reactions

Here are my answers to these 3 reasons given not to take Strontium Citrate
1. I don't care if my Dxa reads 10 % higher all I care is that my Dxa goes up consistently
2. I get my strontium citrate from AOR and Canada does regulate their supplements...so I don't need FDA to do so
3. This study was for strontium ranelate. Strontium tied to a man made product ranelate. The use of strontium ranelate has never been approved in the U.S. or Canada and is now significantly restricted in Europe, while strontium citrate is freely available in both Europe and Canada.

Bottom line, everyone has to decide what chances they wish to take as they fight this disease. One can do nothing and hope for the best and run the risk of a life of fractures. One can choose Big Pharma meds and accept the side effects that go with them.

I chose to do years of research and then chose to try to follow the most conservative and as close to nature way of combating osteoporosis which I could find.
My numbers and no fractures speak for themselves:
2004 Femoral Neck -2.8
2019 Femoral Neck -.6

You will know what is best for you.

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I really appreciate your posts..please don’t stop because they are encouraging for me..I live in Canada and started using Strontrium Citrate about a month ago...did I read your post correctly? Are you using AOR Ortho Bone Ultra as well as Strontrium Citrate? Like you I don’t care how my DXA reads higher as long as it increases consistently. My doctor is bullying me into taking pharma meds but I’m afraid of the side effects.

John, Volunteer Mentor | @johnbishop | Sep 1, 2021

In reply to @flmargie "I am new today reading your very informative responses. I am age 78 with osteoporosis porous..." + (show)

Hello @flmargie, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear about your fractured jaw. I'm sure that must be painful, as well as uncomfortable and difficult to manage. Strontium Citrate and other supplements should be discussed with your doctor to make sure it's safe for you to take. Here's some troubling information I found on Strontium Citrate that would cause me concern.

Why Strontium Is Not Advised for Bone Health - American Bone Health: https://americanbonehealth.org/medications-bone-health/why-strontium-is-not-advised-for-bone-health/

Has your doctor suggested any alternatives to the usual meds that you are not able to use?

ctjboneyknees2 | @ctjboneyknees2 | Jan 29, 2022

In reply to @kathleen1314 "Your information is not quite correct. Yes, strontium is heavier than calcium but not heavier than..." + (show)

@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

Jump to this post

I'm not sure I would trust Algaecal as their primary goal is to promote their product. Also, the link to the asbmr.online is referring to strontium ranelate, which is a prescription not a supplement. The prescription strontium has been banned in Europe. My research (done by my molecular biologist brother in law) says that because strontium is a heavier metal it can take years for the body to break it down and eliminate it, though the body does use the same metabolic process as calcium to break down the strontium.
All that said, we are all trying to find answers to our questions. Glad you are doing research, as am I.

ctjboneyknees2 | @ctjboneyknees2 | Jan 30, 2022

In reply to @johnbishop "Hello @flmargie, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)

This is one of many articles I came across while researching the Strontium supplement. Thank you, John, for sharing this information with others.

kilh | @kilh | Jan 30, 2022

In reply to @johnbishop "Hello @flmargie, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)

@johnbishop Thanks for the article. I have been wondering whether to take or not to take. Stay tuned till Wed., Thurs. and I will send a description of looking out my window. We are due for snow, rain, and ICE. My picture will sure change from today. How is your weather? Keep in touch and be safe. KLH

kilh | @kilh | Jan 30, 2022

In reply to @kilh "@johnbishop Thanks for the article. I have been wondering whether to take or not to take...." + (show)

@johnbishop Thanks for the reply. Too dark to look out the window but what will you see tomorrow? KLH

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