Newly diagnosed osteoporosis and have cried every day this week

I would just like to add after you have learned about this condition and made decisions with your doctors about treatment, please don’t let it define you. I have 3 autoimmune diseases, none of which are curable. They are livable though! Osteoporosis has some excellent treatment paths (not true for all of my autoimmune conditions). One thing I decided early on was to not let those conditions define who I was. I just add osteoporosis to that list. I decide who I am and how I get through this life and don’t become defined by or overly obsessed with my conditions. I wish you the best on your journey and know you have treatment paths that will help you!

@daisy17 I had a warning fracture lifting something heavy into the back of my car. I healed and carried on. Then, while going over some waves while in a tin boat, I got several compression fractures all at once in my lower spine and had to be flown by helicopter off the lake to the hospital. Was a terrible time and home in a wheel chair. Did rehab and eventually healed and went back to work. After couple of months my upper spine went, with two compression fractures after lifting above my head to but laundry on a top shelf. That is when I finally went on the Forteo the first time. I think you are best to explore a medication. Even Prolia, as that worked well for my sister and took her from osteoporosis with fracture to now osteopenia. Huge improvement for her. She has been on Prolia for 10 years and plans to just continue with that. She is 71. You don't want to wait until your numbers are so low that you are fracturing. Especially if your condition does not allow you to tolerate Forteo or Tymlos as they are the best actual bone builders.

@daisy17

Thank you.

@ccps101 Wonderful reply. Thank you. 💐

@kathleen1314 Thanks for the reminder. I stopped Prolia after 1 injection. I have started 70mg weekly of Fosamax to counteract the rebound effect. Years ago I was first started on Fosamax. It gave me reflux and a feeling of nausea everyday. My specialist doesn't like his patients to Google answers. I went to Gemini, Googles AI. AI gave me good advice about how to better tolerate Fosamax. I take it with 8 0zs. of water. In the past, I took it with a swig of water. I stand up a full 1 hour, where in the past I sat down for 1/2 an hour. I'm happy to say I'm not having any side effects so far. Even if I have some side effects from Fosamax, it's better than having broken bones from rebound. Good luck to everyone.

@vagirl57
Well. googling an answer is different than using an AI.

AI google is great for information about how to take meds or interactions and basically anything that involves standard practices.

I will say that AI google is the least accurate of the AIs which I use; AI mode is the second from the bottom and Copilot is the best AI which I have found so far.
I even asked Copilot why Ai google had given me "incorrect/incomplete" information and Copilot explained the programming that let to that misinformation.

So you might look at copilot also. I use Ai google and Ai mode for just general listings of research etc. Then if I need indepth and want to check accuracy or read research in a foreign language, I go to copilot.

Hello to all of you beautiful strong ladies.
For me, Evenity was my first choice as its monthly injection. But the heart warnings aren’t worth it to me. I’m 70. Fairly healthy. I’d like to say, osteoporosis isn’t a death sentence. I’ve had 4 vertebral fractures in a year. My score isn’t that terrible but the amount of fractures tells us my spine isn’t strong. If I have another back fracture Dr says I’ll be in a wheelchair. I’ve taken care of my mother of 10 yrs and had to put her in a nursing home because if I move the wrong way, my back fractures. She passed this last week. I feel so guilty I could no longer care for her. (She couldn’t walk any longer) just pushing the wheelchair hurt my back. I’m in pain all the time.. but here’s the good news..
Tymlos, PT, and light exercise has changed the direction I was going in. Injections every night is a commitment.
But I feel stronger and I’m done getting injections that only help for awhile until I do some gardening or house cleaning. I’ve been on Tymlos for 5 months, I feel stronger. (I hate the injections) ! After 1 yr I will follow up with Prolia for the duration of my time here on earth.
Get your spirts up ladies, we’ve been through worse!
Warm Wishes, E

@eileenvan
What a great attitude.
I have a disease which is tied to a high suicide rate because of the pain of the condition. The osteoporosis diagnosis never hit me that hard because of the context of it within my life and this other disease. I just saw/see osteoporosis as a battle to be waged and controlled. A disease that I was lucky enough to be able to control with strontium and BHRT.

But there are cases of osteoporosis, such as yours, which are more than challenging and which affect our lives desperately. You are a light to us in the midst of your challenges. Thank you.

Just for context, eileen, what is your endocrinologist saying is causing your osteoporosis and your fractures?
I ask because usually strontium or pharma drugs will handle normal, driven by age osteoporosis. It is usually just a disease, conditions or steroid drug driven osteoporosis which can be so resistant to drugs or strontium.

Or...
Then of course you can have fractures which are driven by the osteoporosis drugs of which Evenity is one of those, but usually in the femoral area rather than the spinal area with Evenity So your case doesn't sound like Evenity side effects. But maybe a previous osteoporosis drug, like Prolia would cause spontaneous spinal fractures.

Luckily, in an 18-month study, Tymlos reduced the risk of vertebral fractures by 86% and nonvertebral fractures by 43% compared to placebo. So hopefully, this drug will end your spinal fractures.

Thank you for your information which will help us all and for your great attitude.

I am not a doctor but I have heard of a lot of stories where people have triumphed over scores like that and worse than that. For one thing, you are not of a more advanced age, a big plus. Secondly, it sounds like you are really trying to do something positive with exercise. Walking is good too. My advice is to do the other things you probably already know: Eat well (add prunes if possible; green leafy veggies, yogurt) and take the important supplements needed for bone development (of course calcium, magnesium, D3, and more). Avoid or minimize salt, sugar, and caffeine. Have any tests to see if you have any conditions that are causing osteoporosis such as vitamin deficiencies, celiac, thyroid, gut problems. See a physical therapist that specializes in osteoporosis to teach you ways to strengthen your back and hips safely, and to stay safe in everyday life. I know this doesn't resonate with everyone but I take comfort in prayer.

I agree you shouldn’t panic, although I understand why you are. It is frightening to learn your skeleton is weak, but the good news is you haven’t had any fractures and that is a good sign. Follow your instincts and find a good endocrinologist who understands all the medications and the best order to use them.

My T-scores were worse than yours at the age of 65. Since I am very active, I decided to go with a “bone building” drug called teraparatide (Forteo is the name brand). Other bone building drugs are Tymlos and Evenity. They have to be followed by a drug which slows down your bone remodeling (oral bisphosphomates like Fosamax, or an injectable bisphosphomate called Reclast). This process is 2-3 years of taking drugs, hopefully followed by a long drug holiday, if all works as it should.

Prolia stops remodelling like a bisphosphomate, and can be used for five years if followed with Reclast (timing is very, very important). This is not a route I would personally chose at my age and stage, but some woman do.

Some woman also start BHRT to “lock-in” gains after taking Forteo/Tymlos, or just start taking them to slow down further loss after menopause if they choose not to do the more potent drugs.

You have lots of research to do. There’s lots of information out there. In the meantime, if you can afford it and are so inclined, you might want to hire a Personal Trainer to help you learn how to do a deadlift, squats, farmer’s carry, push-ups, bench rows, pull-ups, etc. With progression to heavy weights, these exercises will serve your bone maintenance very well, along with a good diet of protein/greens, and proper calcium/vitamin D/K2 supplements. Jumping or skipping is also very good for your bones. Again, google how to do this safely at our age with our condition.

Just remember, all is not lost, especially if you take the bull by the horns!!!