← Return to Hesitant to begin drug treatment for my osteoporosis

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@windyshores

I wrote a really long response and lost my internet connection and it disappeared. I will try again.

A DEXA of -4.4 is serious. I had three lumbar spine fractures at -3.7. The pain is horrific for weeks or months, and there is residual disability, pain and even some loss of independence. This is the reason I have been on this forum for awhile. To be honest about fractures. I have endured side effects because quality of life is worse with fractures than with side effects.

One problem is that osteoporosis has no symptoms and you can feel strong. At -4.4 you are not strong and are at risk.

Like you, I tried oral bisphosphonates and Forteo over the years and could not tolerate them. I am willing to endure side effects, as I said, but I mean I could not tolerate them at all. I did cancer meds that affect bones but my doc did not prescribe Reclast as is usually done with this treatment, due to my afib.

COVID interfered with me going on Tymlos. After the fractures, I had to decide between Tymlos and Evenity, the only choices left to build bone. I had assumed Tymlos might cause the same issues as Forteo but it didn't. Evenity was new at that time, and I had seen a masterclass in which someone did Tymlos and then Evenity, in sequence. So I have done that. Two years Tymlos, 4 months Evenity. I will finish by "locking in" with Reclast.

You will probably be offered Tymlos or Evenity. Tymlos is an anabolic that works through the parathyroid. I went from -3.7 to -2.5 on it, severe to borderline. It is good for spine. The injections are daily, done at home, and the medicine leaves your body in a few hours, half life 1 hour. Evenity is anabolic the first half and anti-resorptive for the second half, and is quite potent. It is a monthly injection done at the doctor's office and stays in the body about two months, half life 12.8 days. Many docs are prescribing that these days. Even if a doctor suggests something, you can choose.

I liked Tymlos because I am sensitive and have health issues, and the dose on the pen is adjustable. I could not tolerate a full or even half dose and restarted with 1/4 dose and moved up. Many of us are doing that. It lets the body adjust. There may still be side effects but very tolerable and better than fractures.

I fractured those 3 vertebrae with one unwise movement. Again, my DEXA was -3.7 in spine. I really hope you consider meds, and quickly. Don't lean over to pick things up or twist. A PT can help us move wisely. But I still make mistakes. Hope you appreciate that I am trying to be honest. I don't like scaring people!

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Replies to "I wrote a really long response and lost my internet connection and it disappeared. I will..."

Windy, you are one of the best resources I have found for when I do take that plunge! I hate that you have to be the one to lead us through that dense forest, but am so grateful for your pioneering efforts and willingness to share!

Thank you for your open and honest response to her question. You give encouragement and hope dosed with reality and caution, backed by life experience and research. To someone newly diagnosed like myself, this is huge. You are making a difference!

I concur with your thoughts @windyshores. -4.4 is a serious number and even though I am personally reticent to take potent drugs, I wouldn’t hesitate with a score like that. As you know, I started a bio-similar to Forteo because of my-3.1 spine score and suffered uncommon, serious side effects for the first 5 weeks (heart palpitations, chest pains, severe fatigue). I stuck it out hoping my body would adapt and it did!! I’m over two weeks without any symptoms thankfully.

I’m hopeful I get the same results you did, and I’m already considering trying Evenity afterwards. I’ll talk to my endocrinologist in 22 months about that:). I may just do Reclast, then take a 3 year break, then start Evenity. Not sure yet, but my fear of taking the drugs has been trumped by my worry of not being able to be active into my 70s and 80s!!

Thanks again for your time and contributions to the people on this site. It’s been invaluable to me.

I am just now seeing responses to my post. I so appreciate your thoughtful and detailed experience and advice. Yes, it is frightening to think about both the risks of treatment vs non treatment. “Between a rock and a hard place” seems to be the appropriate mantra for those of us trying to decide on treatment. Again, thank you, I have much to think about.