• Severe Osteoporosis

    Posted by Kim on July 10, 2023 at 8:54 am

    I am 49 years old. I have had myasthenia gravis for 23 years and I am disgusted with my life. Yes, but the last year was going pretty good! I have other medical problems also including brain tumors, but the real reason I’m here is because of going from great bones 23 years ago to a T score of -3.9!!! Like I said, I’m only 49 no I am not on anything, I am afraid to take anything because my MG is doing so good and my neurologist is going to help me talk to the bone specialist because she doesn’t want to flare my MG either?
    Basically, my question here is if you all are any of you have osteoporosis, and I know we’re all different with medication’s. Is there anything that works best for you and that has not caused any problems with your MG?
    I know for sure my neurologist said absolutely not to Prolia.
    Any advice would be greatly appreciated and tired of crying and feeling like I’m dying between weak muscles, weak bones, tumor in my head? I wonder why I have anxiety out of control???

    Thanks for listening! Thanks in Advance for any answers or replies!
    Kim

    Wayne Eisen replied 2 days, 18 hours ago 3 Members · 2 Replies
  • 2 Replies
  • Tina

    Member
    May 11, 2024 at 7:04 am

    Hi Kim. My osteopenia at age 40 went to severe osteoporosis-3.9 at age 60 and is still there. I wasn’t able to take Boniva due to bone pain or calcium pills in my 40s and just relied on milk, diet and exercise. I reviewed Prolia and decided against it. I talked to my neurologist and cardiologist about Evenity and decided to do it. I talked with another patient about her experience after the 12 months of shots and she said her Dexa scan improved substantially with no side effects. I’m into my 4th month now with no side effects. It has to be taken at room temperature and injected slowly to avoid rashes and pain. The 2 shots are one into each upper arm and the effect is less than a flu shot. I’m pleased with the experience so far. Absolutely no impact to my MG. Evenity is the only treatment that is dual action, meaning it both tears down bone like exercise and rebuilds it as biophosphates do like Boniva or Prolia. After the 12 months then a maintenance drug is needed like Boniva or Prolia but I’m going to try Reclast instead. I lost 1 1/2” in my height the last 2 years and an orthopedist xrayed my spine and said it was compressed. My balance and gait has been bad for years so I knew it was just a matter of time before I fell and broke something as I fall a few times a year with seizures. I have an endocrinologist that manages my osteoporosis and the Evenity and she knows how hesitant I am to take other drugs with my MG. Look into Evenity and see if it might be right for you. It’s a very expensive drug and took 9 months to get it approved by my insurance company, but when I explained all of the foregoing and the fact that they would spend a lot more on a fall and fracture that would domino into other health issues, they approved it. If they didn’t I was seriously considering getting a different insurance company as I knew I was at the end of the road with my osteoporosis. All the women in my family broke a hip or spine and didn’t really heal after that. I have so many problems with my spine and left hip so I knew I had to do something and I’m glad I did this so far. After a year I’ll go on the Reclast and if it doesn’t work then I figure I’ll at least had this year without much worry

  • Wayne Eisen

    Member
    May 15, 2024 at 4:28 pm

    I urge all who are suffering from loss of bone density to take lots of collagen. I’ve been taking prednisone for a long time, which is notorious for weakening bones, and my bone density has improved significantly. Add pure collagen to smoothies, soups and stews. Best wishes, Wayne

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