Osteoporosis

Posted by grandmabubblestwin @grandmabubblestwin, Nov 11, 2016

I’ve been reading about osteoporosis and this is what I’ve seen so far: An individual builds bone until about age 30 then they begin to lose bone. Osteo meds do not help you build bone, they may actually prevent the natural bone building process but they do help you retain the bone you have but can make bone brittle. Correct?

@colleenyoung

Thanks for digging up the News Network article about the Mayo Clinic study. It helpful to have this plain language explanation of the study, the video of Dr. Thatcher as well as the link to the Mayo Clinic scientific proceedings.

It's good to get to know a bit about you and your personal relationship with osteoarthritis. You may also be interested in following the Blood Cancers group https://connect.mayoclinic.org/group/blood-cancers-disorders/ and joining these discussions:
– Non Hodgkin's Lymphoma- Watch & Wait Approach https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-watch-wait-approach/
– Non Hodgkin's lymphoma https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-2c0eb7/

Are you taking high amounts of vitamin D3, K2, magnesium, zinc and vitamin A in concert with your doctor and cancer team?

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I’ve stopped the vitamin A. My arterial coronary calcium score came back zero. My blood calcium is in the middle of the green zone. My personal Doctor is on board. The Mayo Doctor aren’t interested as long as I work with my home doctor. My 25(OH)D is now steady at 148 ng/mL.
https://newatlas.com/cancer-hijack-immune-system-treatment/57900/
This website tells how the CD11b protein enhances and multiplies the M1 macrophage.

Vitamin D3 after it becomes the hormone 1,25(OH)2,D3 activates the CD11b protein that enhances and multiplies the M1 macrophage’s which fights cancer from growing! But it’ll take ten more years of study before the FDA will be recommending this if anyone comes up with the money even to pay for the study in humans! I say to h-ll with that. I’m going to keep my D levels between 100-150 ng/ml with the 25(OH)D test and keep all my M1 macrophages working fighting cancer. With my K2-mk4 and mk7 working to keep all my Matrix Gla proteins activated I shouldn’t have a calcium problem in my arteries. This is the most amazing news I’ve found yet.

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@jimma

I’ve stopped the vitamin A. My arterial coronary calcium score came back zero. My blood calcium is in the middle of the green zone. My personal Doctor is on board. The Mayo Doctor aren’t interested as long as I work with my home doctor. My 25(OH)D is now steady at 148 ng/mL.
https://newatlas.com/cancer-hijack-immune-system-treatment/57900/
This website tells how the CD11b protein enhances and multiplies the M1 macrophage.

Vitamin D3 after it becomes the hormone 1,25(OH)2,D3 activates the CD11b protein that enhances and multiplies the M1 macrophage’s which fights cancer from growing! But it’ll take ten more years of study before the FDA will be recommending this if anyone comes up with the money even to pay for the study in humans! I say to h-ll with that. I’m going to keep my D levels between 100-150 ng/ml with the 25(OH)D test and keep all my M1 macrophages working fighting cancer. With my K2-mk4 and mk7 working to keep all my Matrix Gla proteins activated I shouldn’t have a calcium problem in my arteries. This is the most amazing news I’ve found yet.

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There’s also good information on this website. Click on the cancer tab.
K-vitamins.com

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https://www.ncbi.nlm.nih.gov/m/pubmed/23152895/
This site tells how vitamin D promotes the CD11b protein.

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There is a drug called Forteo which you give (yourself) by injection on a daily basis. Also known as teraparatide. It actually builds bone. In the US, there is also Tymlos (which is not available yet). My doctor wanted me to take it (one of the side effects is bone cancer!). I wasnt ready to do that so opted for the Prolia injection.

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@readingteacher

Was on Fosamax for a few years..quite a while ago…then nothing..except Remicade (Rheumatiod Arthritis @ Crohn's)..about to receive Prolia Anyone have feelings on this med pro? con?

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I'm on prolia. Have had two injections and scheduled for bone density in May when I'll find out if there has been improvement. Like the ease of taking this medication: just one injection every six months. I am a drug sensitive type and so far, I am not aware of any side effects.

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@evysar26

I was just diagnosed with severe osteoporosis T-4.13 lumber and Left femoral neck. I had a bad fall and fratured T12.

I am on a lot of supplements for bone health and statred tweaking my diet for optimal bone health.
I have second thoughts on having the Prolia injection and is still on the fence.

I am 69 and consider myself active and healthy until the fall.

Any thoughts in this??Pleae…

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I am 64. A year ago, I finally listened to my endocrinologist (who had been urging me for years to treat my osteoporosis), and received my first prolia injection. Each bone density test had shown a prgressive and alarming decline in bone density. I will have another bone density test in May and hope the results are good. I let my somewhat irrational fears of medication overrule my decision making. The thought of a hip fracture and the loss of independence really scares me. I now regret not starting treatment sooner.

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One of the problems with online groups regarding medical or RX is that most people who post have had problems with the drugs or procedures. The people with great results rarely post. Also, the reader knows nothing about the person's lifestyle or medical history. One person may report horrible side effects from using Prolia but there may be 100 success stories to each nightmare story. One thing is for sure is that there are risks and possible side effects from most procedures and prescriptions. The best we can do is to gather the facts ( evidence based, of course) talk with our doctor, get a second opinion if still on the fence, and then weigh the benefits versers the risks. It really bothers me when I hear people say things like "I've read about that poison and I'll never take that or any other OP drugs" because they are probably going to do themselves a world of harm they might not be able to fix later on. That's just my 2 cents.

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@dkapustin

One of the problems with online groups regarding medical or RX is that most people who post have had problems with the drugs or procedures. The people with great results rarely post. Also, the reader knows nothing about the person's lifestyle or medical history. One person may report horrible side effects from using Prolia but there may be 100 success stories to each nightmare story. One thing is for sure is that there are risks and possible side effects from most procedures and prescriptions. The best we can do is to gather the facts ( evidence based, of course) talk with our doctor, get a second opinion if still on the fence, and then weigh the benefits versers the risks. It really bothers me when I hear people say things like "I've read about that poison and I'll never take that or any other OP drugs" because they are probably going to do themselves a world of harm they might not be able to fix later on. That's just my 2 cents.

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Yes, and for too long for my own good, I was one of those people. Bisphosphanates were definitely contraindicated for me, however, I kept putting off taking Prolia. It was that last bone density I had where the results shocked me into action. Sometimes a tolerable side effect is better than a great big fracture.

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It really is a personal decision. There are many factors involved. Hopefully you have a doctor who will help you. A pharmacist is also very knowledgeable. Do your research and pray. 💞

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@betterbones

Your question mentioned that some meds do not help you build bone. That used to be true– until a few years ago, the meds, bisphosphonates and others, slowed the bone turnover. But newer ones that work like a hormone we have, PTH, have resulted in stronger bones. These types of meds have to be injected– Forteo and Tymlos. Many people on this chatgroup have had bad experiences with meds, but people can have different reactions. I took Fosamax for 5 years without any bad effects. My bone density stabilized then even went up a bit. But when density started down again, my doctor (an endocrinologist) recommended Tymlos, because it has been shown to increase density in the spine. I wanted to build on what I have, not wait until I lose more. I walk on a treadmill for an hour every day and usually lift weights 2-3 times a week– and have for 8 years, and try to get my calcium from diet, but with exercise and calcium and Vit D I still developed osteoporosis in my spine. I did not like the idea of self injecting but I tried it, and have been on Tymlos for over 6 months, with no side effects after the first week or so as I was getting used to it. Until I have a follow up bone scan, I will not know if it is increasing my density or not. But from this one person's experience, I can say that not everyone will have muscle pain etc. I understand people not wanting to use meds, but for me the natural process of bone loss in the spine is something I wanted to avoid if I could. People's bodies are different, and risks are different. Good luck with whatever decision you make. Exercise is certainly helpful.

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Since this is the “General” Osteoporosis forum, I’d love to hear from those who have had positive experiences from the various Osteoporosis treatments. As so many have posted, those with negative experiences are more likely to share their experiences (which are helpful), but it would be equally helpful to hear from those who have had a good outcome from using those medications. I think we all understanding that lifestyle changes are important and should be continued regardless of the meds. But once meds are indicated, knowing the good results helps guide in making a personal decision on what to take.

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I have had 3 infusions so far and it is easy, painless, and only takes a half an hour. I will not get my next decade scan for a while but I am really hopeful. I follow all the advice on the handout my doctor gave me, like taking calcium and vitamin D3 as well.

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@auntieoakley

I have had 3 infusions so far and it is easy, painless, and only takes a half an hour. I will not get my next decade scan for a while but I am really hopeful. I follow all the advice on the handout my doctor gave me, like taking calcium and vitamin D3 as well.

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What kind of infusions are you doing? Have you tried any other meds?

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