Bisphosphonates or Not? Both No Win
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 🙂
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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
@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
Boron seems to be ok in any bone supplement because it effects hormones and how the body regulates magnesium, calcium etc.
The reason you don't take strontium with calcium is because you wish to have the body absorb strontium and the calcium receptor will choose the calcium over strontium so you will just be "peeing" away the strontium if you take it with calcium.
If you take strontium without calcium the calcium receptors seem to take strontium up and use it. Plus, there seems to be evidence of a receptor for strontium in bone, but that is just one study and there needs to be more research.
I and all the strontium users whom I know use strontium citrate. I use the AOR brand because it originates in Canada where they monitor supplements much better than the USA.
I believe that I sent you several links earlier for research about strontium. Strontium does not replace bone. It grows bone. See photo with research linking and see links below
Bone is made up mainly of collagen and calcium plus lots of various minerals including strontium, especially if you live where strontium is in the ground water, and you don't filter the strontium out.
Strontium is heavier than calcium so when you are using a calcium measurement like DXA the Dxa will read about 10% higher than if you just have calcium in your bones.
I know of several women who were fracturing who started strontium citrate and quit fracturing. Research says that strontium users are 47% less likely to fracture than the users who did not take strontium. see research links below
If you don't mind saying, what was your last dxa reading. Also have you cked your hormone levels to make sure you have the hormones which you need to grow bone.
Growing bone is a synergistic combination of many factors including exercise, supplements and hormones. Make sure all those are in the optimum zone before you add strontium. That advice is from someone who has taken strontium citrate for years, only take strontium after you have cked all other natural supplements, hormones, exercise. But I personally would take strontium citrate before I took Big Pharma Meds.
Still, everyone has to make their own decisions. Just be sure to do your research before you make any decisions.
Here are some links to Inspire postings about strontium
https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/strontium-studies-and-research-articles/?origin=freshen
https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/strontium-does-it-prevent-fractures-research-articles-personal-stories/
As always warmest wishes to you my friend.
Is it possible that you mean strontium citrate Lioness?
@kathleen1314 Yes it is typo meant citrate
Thank you so much for this great info! Now I have to find a new bone strength supplement. Can the boron be taken with the calcium? I notice it's not in most supps but strontium is. I value and appreciate your info and opinions very much! Warmest wishes, Sunnyflower
Kathleen, RATS!!! I was just getting ready to order AOR Ortho Bone Ultra and Strontium Support II when I did some research to see if there were any contraindications or adverse side-effects w/ my other medications. My heart dropped when I read about the Strontium citrate. Please take a look and give me your opinion: https://americanbonehealth.org/medications-bone-health/why-strontium-is-not-advised-for-bone-health/ Thanks so much, Sunny PS: As I'm sure you must know, there is a form of Strontium that is still available in England. It was the original form. But is not available in the US. But the Strontium Citrate here, has had it's share of problems such as increased heart attacks and blood clots. Oy vei. Sunny
Please pay attention to #1 of the Three Good Reasons NOT to Take Strontium. I think I mentioned that I had read this some time ago. Thx, Sunny
Thank you for posting this, @sunnyflower and @kathleen1314. I had read this somewhere but did not recall the source.
Also, although boron is OK, you should not get it from borax as some people apparently do. Borax is not meant for ingestion.
JK
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.