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Does the anxiety or fear of this prognosis ever get better?

Posted by rudysmom @rudysmom, Apr 6 10:44am

Maybe it’s just me, but since my diagnosis a few weeks ago my anxiety is through the roof. I made appointments with 2 different Endocrinologist and I have my first appointment tomorrow, hoping it will help put me at ease. As soon as I wake up in the morning it’s the first thing I think of or even in the night if I wake up to roll over. The information is so overwhelming do this not that, then you’ll read something saying the total opposite. The statistic of 1 out of 2 women will get a fracture is mind numbing. I feel like I’m doomed no matter what I do. Every time I get a twinge in my back I now think, here we go. I’m 60 and have no other health problems and take no medications, yet. I exercise every day now and listen to books on tape to get mind focused on something else. I’m not afraid to do the work, just afraid of the future outcomes, which I know I can’t control, but anxiety and fear have their own ideas.

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jw9 | @jw9 | 2 days ago

Maybe it would be helpful to talk with a therapist if anxiety is keeping you from taking care of your bones. I have done this in my life and sometimes when our mental health is good it's more likely we can follow a plan for our physical health. It seems there's something beyond osteoporosis in all this for you. You are young still! And the fact that your other health history is good, no medications, you are very fortunate to start out with that. There are really good suggestions for you here. I add this piece because I didn't see it anywhere else.

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cphip | @cphip | 2 days ago
In reply to @followheart87 "I understand people are more autonomous today and make their own decisions about their health problems..." + (show)
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I understand people are more autonomous today and make their own decisions about their health problems but osteoporosis is one of those conditions that is not monitored very often like cholesterol so you cannot know for sure if your lifestyle is helping it or not. One can experiment with supplements and nutrition and get their own cholesterol tests to see how their dietary changes helped their cholesterol. One can't do that with osteoporosis. It's 2 years to wait for the next Dexa scan and by then, your bones could be even more deteriorated.

In 2023 my Dexa scan showed mild osteoporosis so I went on a bisphosphonate and couldn't tolerate it after 4 months. I went off it and focused on nutrition, supplements and weights. This turned out to be the wrong decision for me. I wasted almost 2 years taking matters into my own hands rather than seeking professional recommendations. I should have seen Rheumatology after going off the bisphosphonate. Perhaps I would have been started on the next level of medication. I regret that I didn't look into it. I was complacent. Now I have severe osteoporosis.

Everyone is different. My friend has only mild osteoporosis and is focused on nutrition, supplements and exercise and it sounds like her tests have been stable. That wasn't the case for me.

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@followheart87 You might be able to get doctor order for another bone scan after only 1 year. I am going to ask for that. I will look into Bone Turnover Marker (BTM) tests REMS tests. Think I had one once before. Thank you for the reminder.

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dmshope | @dmshope | 1 day ago
In reply to @followheart87 "My doctor prescribed Evenity due to my severe osteoporosis. She told me that if my Dexa..." + (show)
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My doctor prescribed Evenity due to my severe osteoporosis. She told me that if my Dexa scan results showed mild or even moderate osteoporosis, her treatment decision would have been different.

I'm pretty sure Evenity isn't prescribed for someone with mild or maybe even moderate osteoporosis. You can't just "choose" to go on Evenity yourself. There are criteria for going on it. The insurance company won't approve it otherwise. I understand it's like $4000 per injection out of pocket. I don't pay this, however.

I was told I have "end stage osteoporosis". For me, it's too late for nutrition, supplements and weights. In fact, I already did all of those things through most of my life. I can't rely on "maintenance" drugs at this point because my spine is already too deteriorated. I need a bone rebuilding drug.

I understand Evenity is like a game changer. Yes, there's a risk of heart attack and stroke. I had to get a cardiac screening before going on it. I'm willing to take such a risk.

Like I said, Evenity isn't prescribed for someone with mild osteoporosis nor even moderate. There are other drugs in the pipeline. It's for someone with severe osteoporosis.

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@followheart87
Dear Follow your heart!
I send postive energy on your path to recovery and healing. But please note - EVENITY DOES NOT WORK FOR EVERYONE. I was a nonresponder - no change in Dexa and actually fractured my leg/heel ( non traumtic). I am 71, a prior yoga teacher, healthy,excellent diet and no system issues ( no cancer, tyroid, gut, inflammation, heart etc)
Make sure to have your p1NP mesasured at one month and then again 3-6-9.
If p1NP does not reach 50 at one month , there is risk of nonresponse. ( this is from JBMR 2023) It does mean to take stop medicine - just that you may not see gains as expected or none at all. My path is: 22 months tymlos/6 weeks actonel/then 11 months evenity.
Now the question is what to do... bone biopsy with tetracycline may be next....I have had all genetics tested and everything else one could imagine. My docs are baffled ... so we need creative thinking. Prayers to all for healing in what way is best for us.

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shmbrd | @shmbrd | 1 day ago
In reply to @cndstegle "@lynn59 Txs for your comments. I too am very active and developing fear to be active..." + (show)
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@lynn59 Txs for your comments. I too am very active and developing fear to be active but need it mentally too. I want to supplement but not sure what to take. My doc says they don’t help with fractures but I feel like it’s good for bone health in general. What do you take?

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@cndstegle
Keep reading through the osteoporosis posts here, and you could also try "Inspire" to get an idea what other people take.

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