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Terrified Of My Next Step
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fragilebones posted:
I am new to this community. I have severe osteoporosis. My t-scores are:
-3.8 in my spine and -2.0 in my hip. I am only 39 years old. My D levels and calcium levels in my blood are fine....

I am post menopausal, having a hysterectomy when I was 22. I grew up calcium deficient, due to a milk allergy. I have already lost 2 inches in height. I am white and very thin framed. I am only 89lbs. I have already broken bones. Including Vertebrae in my spine.

I just got my latest scan back. The scores are frightening. My Dr. wants me to have a Reclast infusion. With everything I know about Reclast, I am scared to even take the next step. I don't know if I want to even consider reclast or forteo... I really just don't know. What else is there to consider?

I was diagnosed with Osteoporosis when I was 33. I was put on Fosamax, which I stopped when the the side affects hit.

I take a bunch of supplements focused towards bone health. Not limited to Vitamin K2, 2000 I.U D3 and others..... The natural way doesn't seem to be working. What else is there for me to consider?
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An_245857 responded:
Hi,

I wouldn't be too terrified yet. I came back from Afghanistan and found out I was a - 4.0 and that the Army knew about it 15 years earlier and didn't tell me or treat me. The VA knew it and never told me and never treated me. Sad, but true. I broke my back almost two years ago. I was on Fossamax, but switched to Forteo and it works!!! Makes your bones hurt, but so does osteoporosis and a compression fracture definitely hurts!!! I was at a - 2.3 back then and after taking Forteo, I am at a - 1.3 now, which from 2004 to now, which is a very good thing. It went up significantly after 2 years. Talk to your doctor and don't forget that stem cell technology might help and eventually cure many of these types of diseases. I just shouldn't have gotten osteoporosis at 32 years of age and it was not heredity but environmental. I had my family members get bone scans and it does not run in my family. Good Luck.
 
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Tomato05 responded:
Are you exercising?

And is your diet healthy? It is good that you are taking all those supplements, but never underestimate the importance of a good, balanced diet for optimal nutrient absorption.
 
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bonebabe responded:
Glad you realized the natural way doesn't work. Once you hit a certain level (and you have exceeded it!) you need meds. The fact that you've already had a compression fracture doubles your risk of having another. Your small bones will thin very very quickly because there's not much bone there.

Forteo is the big guns of osteoporosis treatment. It is made from the parathyroid hormone and is the only medicine that actually will grow new bone. You will be on it for two years, then it will be important to strengthen that new bone with a bisphosphonate. Reclast is a good choice.

You need to be very very careful in how you move during the day. Do not bend forward from the waist. Keep the back straight and bend from the hips. Also no side to side twisting of the spine.

The National Osteoporosis Foundation has an excellent website that has a FAQ section that can address most, is not all, of your concerns. www.nof.org They also have a booklet we use in our rehab classes called Boning Up on Osteoporosis. It's only $1 and is fantastic. Even gives illustrations of correct and incorrect movements.

Forget possible side effects of medication. You're so far beyond that. The side effects of a lifetime of restrictive fractures are permanent and likely if you don't intercede now.

I wish you success and no more fractures!
 
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orangebricks replied to Tomato05's response:
I agree with Tomato05. Having a balanced diet is a necessity to taking the next steps.

But yes, moving onto a medical option is something that sounds like is a good idea at this point
 
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Anon_129009 responded:
I should have added to my previouns Vitamin K2 post that a friend, who started taking it shortly after I did, improved on her latest bone scan from a diagnosis of osteoporosis to osteopenia instead. She's probably in her 70's.
 
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bonebabe replied to Anon_129009's response:
Vitamin K2 is an essential part of good bone health. In fact, a recent study showed promise of Vit K2 combined with a bisphosphonate decreased the risk of fracture in osteoporotic women.

I think people are getting too caught up in a number - as in a T-score. The number doesn't tell the whole story or guarantee anything. It's all about your risk for fracture. The T-score is only one of those risks. And T-score, not Z-score (age matched comparisons), is what is given to post menopausal women.

A T-score is just a number used as a base for measuring. Osteoporosis is defined as having a T-score at -2.5 or lower. Does that mean if your T-score is -2.3 or -2.4 (osteopenia) you're out of the woods? No. It would be like defining obesity at 180 lbs. For someone who's 5' tall, it would be ludicrous to think at 179 lbs, they didn't have a weight problem, but at 180 they did. Same thing with T-scores.

Another thing about T-scores. They can be falsely elevated by arthritis. As we age, our chances of having arthritis greatly increase. That make the bone look denser. If someone's spine was a -2.6 and the latest DXA showed an "improvement" to
a markedly higher number, we would consider the possibility of lumbar arthritis (back pain) and scan the forearm to get a clearer picture of the bone density.

A word of caution about Vit K in any form. Do not take supplements of this without having a conversation with your doctor. Vit K is critical to the body's blood clotting function, and you could be in real trouble self dosing with Vit K. Have your levels checked, and if your doctor thinks you need more, let him tell you how much and how often. It's a delicate balance for a lot of people.

I hope this is clearly written and understandable. To say you've gone from osteoporosis to osteopenia is not enough information to assume improvement and does not necessarily mean that you've dodged a bullet in your chances of having a fracture. There are way too many other considerations in determining fracture risk.
 
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Pattymack_2000 replied to bonebabe's response:
Thanks for pointing out that anyone on drugs such as Coumaden (warfarin) for the prevention of blood clots should definitely check first with their doctor. It may be clearly contradindicated in their situation. I certainly should have added that to my discussion. As for my second post those were the classifications from who ever it was that viewd her previous bone scan and wrote up the report. I know this can vary and may be misleading, which is why in my first post I added that my improvement had reached the level of being considered clinically significant.

Anon-129009


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