How bad is a spine T-score of -4 ?

Posted by Sophie93 @sophie93, Sep 1, 2023

Is it too bad?
Is there a chance for "turning back" from such score?
Has someone actually improved it?

I feel devastated to see this score, Given my age, I don't want to live all my life in fear that I will fracture. Just asking for your opinion/experiences.

Thanks,
Sophie

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Profile picture for susaniqbal @susaniqbal

Sophie, I was diagnosed with severe osteoporosis a year ago. My T score for my spine was -3.6. After 12 months of Evenity my T score was -3.5. I did everything possible from a high protein and calcium diet to walking 3 to 5 miles a day, lifting free weights and physical therapy twice a week for one whole year. I was told by my doctor that I’m in the 5% group where Evenity did not work for me. Not sure why, it could have been my own antibodies neutralized the drug, my thyroid disease or the osteoporosis was so severe when diagnosed that is was too late to turn it around. I’m on Prolia now and still maintaining my same routine of diet, exercise and prayer in hope of a lower score come 2026. I pray that you will have a better outcome than me.

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You don't mention it so I assume you were not on a bisphosphonate prior to the Evenity? If you were, that might explain the lack of improvement while on Evenity. If not, I am sorry to hear that it didn't work for you.

I am on Evenity now but I took Fosamax for over five years. I stopped 15 months before starting on Evenity but I know the Evenity may not work as well for me because of the years of Fosamax.

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I also have a T-Score of -4 in my spine. I understand the fear of having to treat osteoporosis for a long time. I am in my 50's. I still have not found a good long-term treatment method that I feel comfortable with. One of my doctors looked at my DEXA Scan and said, "Why don't you try Prolia and see how that goes for you?" She did not tell me about the rebound effect which occurs with Prolia. Now I feel like I have to do a lot of research before starting any medication.

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Profile picture for oopsiedaisy @oopsiedaisy

Prolia is used to preserve bone density (anti-resorptive) while Evenity is used to increase bone density (anabolic) so that's probably why you didn't see a significant gain while on Prolia. But it's good that it also prevented bone loss after your Evenity treatment.

Why did you stop HRT? Continuing on it if you can would also help you preserve the bone you built from Evenity.

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I did not stop BHRT. That’s a must for me even though my docs are against it. Prolia does build bone density usually 6-8 percent during the first two years in the spine. Prolia affects both density and quality aspects of bone. It increases BMD and reduces fracture risk.

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Profile picture for hollygs @hollygs

I think if someone is looking for someone who specializes in osteoporosis treatment, the best search is "metabolic bone specialist."In general, I would agree that an orthopedist is probably not the best option, but my first specialist was an orthopedic surgeon who is Chief of the Metabolic Bone Disease Service at HSS in NYC. I was referred to him - otherwise I never would have found him. My endocrinologist is not current on osteoporosis treatment and isn't interested in becoming so. My new doctor is a rheumatologist who specializes in osteoporosis and I love her.

Totally agree re: Prolia.

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@hollygs
Hi, recently diagnosed and desperate to find a good doctor. Can you please share your doctor’s name? I am in NYC. Thank you!

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Profile picture for amyt123 @amyt123

@hollygs
Hi, recently diagnosed and desperate to find a good doctor. Can you please share your doctor’s name? I am in NYC. Thank you!

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@amyt123 A couple of NYC suggestions: Hospital for Special Surgery (ignore the name, I know it sounds like the wrong place), and Mount Sinai (Dr. Kim.)

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Profile picture for amyt123 @amyt123

@hollygs
Hi, recently diagnosed and desperate to find a good doctor. Can you please share your doctor’s name? I am in NYC. Thank you!

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@amyt123 Hi. My doctor is Nicole Leung. She's at:
NYU Langone Ambulatory Care
324 East 23rd Street
New York NY 10010-4701
212-598-6321

I also previously saw Dr. Joseph Lane at HSS, but my insurance changed to Medicare and he didn't take it.

Best wishes to you moving forward!

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Profile picture for shorty321 @shorty321

I also have a T-Score of -4 in my spine. I understand the fear of having to treat osteoporosis for a long time. I am in my 50's. I still have not found a good long-term treatment method that I feel comfortable with. One of my doctors looked at my DEXA Scan and said, "Why don't you try Prolia and see how that goes for you?" She did not tell me about the rebound effect which occurs with Prolia. Now I feel like I have to do a lot of research before starting any medication.

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@shorty321
Osteo is a very serious disease and also very individual. Causes are multifold and eliminating basic contributing factors ( thyroid, inflammation, gut issues, diet issues, stress, systmeic imbalances as high urine cal, high vit d or high homocysteine etc ) is critcal. Getting bone markers done before taking medication is critical. Yes yes yes - youwill need to educate yourself and do alot research on your own snd you will need to be your own advocate. My high recommendation for overall education is Great Bones by Dr Keith McCormick. This is a fabulous reference - somewaht tecnical but stick with it. You will learn and you will find hope that you can manage this disease. Also build a team of docs - I have a great primary care, 2 endos, Dr McCormick, a DO. You can do this. In my humble opioin Prolia is NOT a 'lets try' it medication. You may consider 'bone building - anabolic' help at this point. Sending healing light

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What medications did you end up taking? My spine t-score is the same as yours. I haven't taken any medication. yet.

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