Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

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

Hi all,
I am 65 and was diagnosed with Severe Osteoporosis in Feb. I was totally shocked as I am active, I exercise, walk and do not have a secondary DX. No family history. My score is -3.8. I have a huge bill to climb but I am taking Tymlos. It isn’t that bad and I can’t really say if the back pain when laying dow is because of meds, or osteoporosis. I take calcium, Vitamins D3 and K. And yes, some days are better than others. If anyone has tips, natural remedies for pain please share.

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@nancy69

thank you so much for taking the time to reply. I will check out Together.

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Together with Tymlos seems to be discontinued. The website has nurse educators only. So you have to go to the Radius Assist on the Radius site directly.

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@windyshores

I had a 20% gain in my spine, going from -3.3 to -2.5, which is now borderline. I had a9% increase in hip which is more than expected.

I am sensitive to meds so started Tymlos at a low dose and ramped up so my body could get used to it. The pen has "clicks" that adjust the dose. I did 6-7 clicks most of the time and the full dose is 8. I still did very well.

The company, Radius, has a patient assistance program. There is a fairly generous income requirement. You can call Together with Tymlos for advice.

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thank you so much for taking the time to reply. I will check out Together.

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@nancy69

hello, my name is Nancy and my osteopenia went to osteoperosis in lower spine and hips and although I did not have a scan of my neck, I suspect issues there as well. My endocrinologist is working with me to find a drug plan I can afford and doesn't affect my heart and we have currently landed on Tymlos and I am waiting to change to an insurance company that covers some of the cost. Still, it will end up costing about $3k per year which is a lot and will mean sacrificing travel for the next few years. Is there anyone who has taken this drug with success? I don't mind the sacrifice if there's a real improvement. Thanks you for any advice you might have on this drug.

Jump to this post

I had a 20% gain in my spine, going from -3.3 to -2.5, which is now borderline. I had a9% increase in hip which is more than expected.

I am sensitive to meds so started Tymlos at a low dose and ramped up so my body could get used to it. The pen has "clicks" that adjust the dose. I did 6-7 clicks most of the time and the full dose is 8. I still did very well.

The company, Radius, has a patient assistance program. There is a fairly generous income requirement. You can call Together with Tymlos for advice.

REPLY

hello, my name is Nancy and my osteopenia went to osteoperosis in lower spine and hips and although I did not have a scan of my neck, I suspect issues there as well. My endocrinologist is working with me to find a drug plan I can afford and doesn't affect my heart and we have currently landed on Tymlos and I am waiting to change to an insurance company that covers some of the cost. Still, it will end up costing about $3k per year which is a lot and will mean sacrificing travel for the next few years. Is there anyone who has taken this drug with success? I don't mind the sacrifice if there's a real improvement. Thanks you for any advice you might have on this drug.

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@magluchi

Thank you for sharing this great info.
Does anyone know if the Dex machines at the Jacksonville Mayo have this capability??

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This website https://www.medimapsgroup.com/ can help you find DEXAs w/ TBS. When I submitted the form, they got back to me almost immediately.

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@fearfracture

TBS is trabecular bone score. The only way to get this info is to have a DEXA on a scanner with TBS capabilities. Most scanners do not have TBS software installed and therefore
most DEXA reports do not provide this info. Additionally, most endocrinologists never mention the benefits of getting a DEXA w/ TBS to patients. Trabecular bone is the web-like or sponge-like bone inside your bones and TBS is a better indication of bone health/strength than t-scores. Vertebra are more likely to fracture (collapse) if TBS is low.

What are you doing to improve your balance? And if you don’t mind sharing, what is your age?

I’m 54 and I was diagnosed w/ osteoporosis at age 50. On my 1st DEXA, my total lumbar t-score was -3.9. I don’t have any fractures and my balance is excellent. Over the last 1.5 yrs, I’ve incorporated balance specific exercises to keep my balance up as I age and to potentially increase it.

My 81 y.o. mother was experiencing balance issues and earlier this year she went to physical therapy for her balance and it really helped. If you don’t want to do physical therapy, look up balance exercises for people with osteoporosis.

Also, I can’t find a link to the specific study that I read this in, but about a year ago, I found a study that said that women doing HRT who supplemented magnesium were able to increase their TBS. If you don’t currently take a magnesium supplement you may consider adding it. Start slow. Too much magnesium will over stimulate your bowels—sometimes it just takes a little experimenting with which type of magnesium your body can tolerate best.

Here are some links to info on magnesium. The interesting thing is that labs (blood work) are not necessarily accurate regarding magnesium in the body—even if the numbers come back w/i range, one can still be deficient.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5926493/

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Magnesium citrate is the one that loosens bowels. If constipated, that will be helpful. If you do not need that stool-loosening effect, magnesium bisglycinate (or glycinate) is the better option.

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@fearfracture

TBS is trabecular bone score. The only way to get this info is to have a DEXA on a scanner with TBS capabilities. Most scanners do not have TBS software installed and therefore
most DEXA reports do not provide this info. Additionally, most endocrinologists never mention the benefits of getting a DEXA w/ TBS to patients. Trabecular bone is the web-like or sponge-like bone inside your bones and TBS is a better indication of bone health/strength than t-scores. Vertebra are more likely to fracture (collapse) if TBS is low.

What are you doing to improve your balance? And if you don’t mind sharing, what is your age?

I’m 54 and I was diagnosed w/ osteoporosis at age 50. On my 1st DEXA, my total lumbar t-score was -3.9. I don’t have any fractures and my balance is excellent. Over the last 1.5 yrs, I’ve incorporated balance specific exercises to keep my balance up as I age and to potentially increase it.

My 81 y.o. mother was experiencing balance issues and earlier this year she went to physical therapy for her balance and it really helped. If you don’t want to do physical therapy, look up balance exercises for people with osteoporosis.

Also, I can’t find a link to the specific study that I read this in, but about a year ago, I found a study that said that women doing HRT who supplemented magnesium were able to increase their TBS. If you don’t currently take a magnesium supplement you may consider adding it. Start slow. Too much magnesium will over stimulate your bowels—sometimes it just takes a little experimenting with which type of magnesium your body can tolerate best.

Here are some links to info on magnesium. The interesting thing is that labs (blood work) are not necessarily accurate regarding magnesium in the body—even if the numbers come back w/i range, one can still be deficient.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5926493/

Jump to this post

Thank you for sharing this great info.
Does anyone know if the Dex machines at the Jacksonville Mayo have this capability??

REPLY
@judy58

What is TBS? My balance is dreadful. I have severe osteoporosis.

Jump to this post

TBS is trabecular bone score. The only way to get this info is to have a DEXA on a scanner with TBS capabilities. Most scanners do not have TBS software installed and therefore
most DEXA reports do not provide this info. Additionally, most endocrinologists never mention the benefits of getting a DEXA w/ TBS to patients. Trabecular bone is the web-like or sponge-like bone inside your bones and TBS is a better indication of bone health/strength than t-scores. Vertebra are more likely to fracture (collapse) if TBS is low.

What are you doing to improve your balance? And if you don’t mind sharing, what is your age?

I’m 54 and I was diagnosed w/ osteoporosis at age 50. On my 1st DEXA, my total lumbar t-score was -3.9. I don’t have any fractures and my balance is excellent. Over the last 1.5 yrs, I’ve incorporated balance specific exercises to keep my balance up as I age and to potentially increase it.

My 81 y.o. mother was experiencing balance issues and earlier this year she went to physical therapy for her balance and it really helped. If you don’t want to do physical therapy, look up balance exercises for people with osteoporosis.

Also, I can’t find a link to the specific study that I read this in, but about a year ago, I found a study that said that women doing HRT who supplemented magnesium were able to increase their TBS. If you don’t currently take a magnesium supplement you may consider adding it. Start slow. Too much magnesium will over stimulate your bowels—sometimes it just takes a little experimenting with which type of magnesium your body can tolerate best.

Here are some links to info on magnesium. The interesting thing is that labs (blood work) are not necessarily accurate regarding magnesium in the body—even if the numbers come back w/i range, one can still be deficient.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5926493/

REPLY
@pami

How many months have you been doing the 1 mg of Reclast? I wondered how that is working for you?

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I decided against the Reclast and started Fosamax one pill, once a week. Now I am getting stomach upset, just started three days ago though and will see how it goes.

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