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Younger than usual with severe osteoporosis
Looking for others with severe osteoporosis at a "youngish" age, for mutual support. I am 53 with severe osteoporosis---t-scores: lumbar -3.7, and femoral neck -3.2. I had a vertebral compression fracture at age 50, but wasn't given a DEXA scan until 2 years later.
Like so many, I did everything right in my adult life--exercise, healthy diet, supplements. It's at least, in part genetic, and partly because I am very petite and thin. My mother is almost 80, was diagnosed with osteoporosis in her 50s, but even now, without any treatment, her t-scores are not as bad as mine.
In May, I had my first Prolia injection. My insurance denied coverage for Evenity. No other options were given to me. The advice I received was, "Don't worry, take suppliments, keep exercising, and don't fall."
I am hopeful, while being realistic. I'm looking to connect with others who understand.
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I have been diagnosed with osteoporosis from years of taking epilepsy drugs coupled with Cushing Disease, @gpt
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1 Reaction@hdeff I'm so sorry about losing your husband. That's very stressful and now osteoporosis. January will be here before you know it and I'm sure your doctor will want to put you on an anabolic-possibly Evenity since it builds bone quickly. Many people have had fantastic results with the anabolics.
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3 Reactions@soggybones thank-you. That's very kind. I'm really hoping my extended medical will cover an anabolic medication for me 🤞
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2 Reactions@kobebeef2026
Thank you for the reply. To deal with Osteoporosis and Cushing disease makes it very difficult. I am wondering what was the Epilepsy drug you were taking? I would like to know how it was confirmed or what test to diagnose the Epilepsy drug caused the Osteoporosis?
I live in Canada, we do have private health insurance, my doctor would never diagnose a drug she prescribed. I am sure no one wants to take drugs. But I do hope you're getting relief from the Cushing Disease and Osteoporosis.
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1 Reaction@soggybones
I sorry for the loss of your husband. I was prescribed Evenity for my Osteoporosis. I am a 63 year old guy, My bone density tests for ten years showed I have the bones of a teenage girl.
I don't feel any immediate change from the injections. I was told the treatment is 1 injection every month for 8 months. Unfortunately I found I was having trouble breathing in damp weather, so I traveled south for the winter. Not completed the full prescription of Evenity. My blood work shows I had a low level of D, then given a injection of Vitamin D.
I understand your concern for falling.
drug was tegrtol, I was in to have a hernia repaired and surgeon found tumor on one of my adrenal gland (He knew I had CLL). The doctor noticed right away by hump on back and moon face, had me take a fasting cortisol test and it was double the normal amount, had adrenal gland that had tumor on it removed. Remember elated cortisol levels also contribute to bone loss. @gpt
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1 ReactionWow! I am so sorry, I often think about how chonic pain puts a stress on the body. This might increase the chances of cancers. I have a very sharp pain in my ribcage for about 6 months. My doctor is passive about my recovery, quoting. " This will take a year to recover from "
I feel if I waited the year, it will be too late to correct my spine and ribcage. I don't have to inform everyone about Naproxen? Should only be used for a short period. My doctor prescribed for 16 years! I don't take it anymore
@gpt my osteopath/MD tells me not to exercise through pain, and then suggests helpful stretches. Though sometimes, if I feel pain might happen I walk and that can help.
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1 ReactionYes, the big question, to exercise during pain, or not?
I am doing hot yoga and the instructor thinks I need continue but take it easy. I have developed a pain in thehip, hopefully it is my spine straighting out my neck is straighter.
I am just getting back walking as I went 3 years in need of a operation on my ankle. That was a great operation now I can walk 😊
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1 Reaction@kobebeef2026
Thank you, I am going to check my blood work.
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