Hesitant to begin drug treatment for my osteoporosis

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!

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.

windyshores....thank you for your response...no, you have not offended me but I very much appreciate your input. I feel for you because I can identify with much of what you have had to go through although our experiences are different. Honestly, when I first read your reply and you said you were able to take Tymlos, I had hope....a big hope....but it didn't last, only briefly. I am very very very scared as I feel if Tymlos could kill me, it will.

I really don't know what I will do right now as I'm frozen with fear....either way scared to take the drugs and also scared not to take drugs. Thank you, even though I'm too scared to act on it right now, but you've given me some hope.................

artiste181,
Yes!!!!!!!!!!!! My osteoporosis is worse than yours!!!!!!!!!!!I have the worse case of osteoporosis that my doctor has ever seen!!!! And I was just diagnosed with it, and that is how it was presented to me!!!!! Talk about shock and devastation...My spine T-score is -5.6, so you should feel better about your condition. The thing is my doctor is not hearing me when I say I can't take prescription drugs and my system is very sensitive and I am very petite.....I have been sent to the ER many times for far less dangerous drugs than those for osteoporosis. I am 73 years old but have never had a fracture of any kind.... so should I worry since I am going against medical advice??? Going with the recommended pharmaceuticals for osteoporosis would be suicide for me especially in light of the serious possible, but very likely for me, side effects? I have no choice but, to go the natural therapy way to deal with it. On another note, I question the DEXA scan reading as there have been questions related to DEXA scan and petite woman. As we have less bone in the first place but are my bones are compared to someone who weighs and is much bigger than us petites?

Good luck with which way you decide to go with treatment!

Has anyone went on Fosamax after finished the Tymlos injections?

Good evening, @grammy9. After two years of Tymlos, I was told to begin Prolia. That was a huge mistake for me. So, my new Mayo endocrinologist changed the option to Fosamax (alendronate). I will complete two years next month, so I have scheduled a Dexascan. I am anxious to see how well my bones are performing.
May you have happiness and the causes of happiness.
Chris

Thank you for replying. I have heard so many bad things about Prolia and worried they will try to give me that after I finish treatment. Thank you so much for your information.

@grammy9 you can be in control of what you take for medications!

I know but it's hard to decide which is best. I was on fosamax for 9 years. My dexa scan kept getting worse and my doctor sent me to specialist. They suggest tymlos...forteo or evenity. With bone cancer and heart issues with them it's terrifying.