Any non fracture members?

Posted by rudysmom @rudysmom, May 18 7:24am

I guess I’m just looking for some encouraging words. I was diagnosed in February and still working through the different stages of grief/loss. I seem to have more days stuck in depression/sadness.

So, was just wondering if anyone on here has dealt with OP for quite a while and hasn’t fractured? I know you can fracture even if your scores are osteopenia range. I feel like everyday I’m just waiting for a fracture to happen. Im exercising 6 days a week and watching my food intake. I’m just hoping as time goes on this feeling lessens. Sometimes I’m not sure if it’s the diagnosis that’s making me sad or just the fact that I’m getting older, I’m 60, and reality has finally set in.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I’m 70 and have been watching my declining T-scores for 20 years. My lumbar score has been in the -3.0 and below range for over 10 of those years, most recently -3.7, but that isn’t really what predicts a fracture. Overall health, level of activity, genetics, nutrition….so many factors determine your bone strength. Density is only one of those factors, but it prompts doctors to emphasize medication, sometimes even before investigating causes or questioning patients about fitness, diet, balance issues, previous falls.

I have not taken any osteoporosis medications, yet, but I have made a tremendous effort to do everything in my control to be as strong and healthy as I possibly can and to stay on top of all research. I have taken a few nasty falls, surprisingly without fracturing, yet!

You are as healthy now as you were in January before this diagnosis. This is not an emergency, and you have time to read, reflect and relax. Find a good personal trainer to make sure you have good form, and work on balance as well as strength. Find solid sources of information (many wise people here), read everything, address any nutrition deficits. Explore all your options before making a decision, and then make the one that is right for you. For some of us here, that is medication, for others it is not. Both paths are reasonable. This is not a one size fits all situation.

That age trap is paralyzing. My daughter is struggling with turning 50 and I told her I wish I had never wasted one moment being sad about turning 50, or 60, cause here I am now, 70 and definitely not wasting any more moments.You are as young as you feel! Hang in there. You are in good company!

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Profile picture for frog100 @frog100

Hi I am 82 going on 83 in August and I appreciate all the sharing. I was diagnosed OP twenty plus years ago. I took actonel for five years and tried other meds with some reactions. I too walk every day for 40 minutes, have a healthy diet and try to eat everything listed for people with OP. My Endo doc wants me to start Evenity since my OP is at the point of needing something stronger. I want to build strong bones. I have read everyone’s comments and am taking them into consideration. I can be depressing since they are about all the side effects, but I have to keep in mind all the comments out there that have not been shared about how the meds have worked and they are doing great. I have not had any fractures to date . I just have to my part based on all the research and doc recommends, then trust God for the rest,

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@frog100 I had no side effects from the Evenity - thank goodness! I'm now on Reclast once each year to maintain the gains I got from the Evenity.

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Profile picture for glojo @glojo

I’m 70 and have been watching my declining T-scores for 20 years. My lumbar score has been in the -3.0 and below range for over 10 of those years, most recently -3.7, but that isn’t really what predicts a fracture. Overall health, level of activity, genetics, nutrition….so many factors determine your bone strength. Density is only one of those factors, but it prompts doctors to emphasize medication, sometimes even before investigating causes or questioning patients about fitness, diet, balance issues, previous falls.

I have not taken any osteoporosis medications, yet, but I have made a tremendous effort to do everything in my control to be as strong and healthy as I possibly can and to stay on top of all research. I have taken a few nasty falls, surprisingly without fracturing, yet!

You are as healthy now as you were in January before this diagnosis. This is not an emergency, and you have time to read, reflect and relax. Find a good personal trainer to make sure you have good form, and work on balance as well as strength. Find solid sources of information (many wise people here), read everything, address any nutrition deficits. Explore all your options before making a decision, and then make the one that is right for you. For some of us here, that is medication, for others it is not. Both paths are reasonable. This is not a one size fits all situation.

That age trap is paralyzing. My daughter is struggling with turning 50 and I told her I wish I had never wasted one moment being sad about turning 50, or 60, cause here I am now, 70 and definitely not wasting any more moments.You are as young as you feel! Hang in there. You are in good company!

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@glojo "You are as healthy now as you were in January before this diagnosis." Great observation and excellent feedback all around. Thank you for sharing.

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Profile picture for wilkenl @wilkenl

@rudysmom I can completely relate to how you feel about your new diagnosis - it was really hard for me, too, to realize that my body wouldn't be able to continue doing the things I loved: golfing, skiing, etc. After being unaware that I had hyperparathyroidism for probably 5 or 10 years before a doctor actually looked at my blood test results, my spine was at -3.8. My endocrinologist called it "scary." A year after having three of the parathyroids removed (along with my entire thyroid, when they discovered it was cancerous), my spine was at -3.4. After fighting the idea of taking drugs to resolve it, I gave in and took oral alendronate, which I didn't tolerate. A year or two later, I gave in to the recommendation for Evenity. A full year of monthly infusions later, my spine was at -2.6. I couldn't have been happier! Yes, still in the osteoporosis range, but maybe not quite as scary anymore. Ironically, a month after I finished the treatment, I stubbed my fourth toe on the end of the bed and suffered a spiral fracture - the first fracture of my entire life at the age of 67! Jeesh!

I would strongly encourage you to get the book Great Bones by R. Keith McCormick. One of the most important takeaways from the book (for me) is that just because we have osteoporosis doesn't mean we don't have strong bones, per se. Exercise, eating lots of nuts and seeds, getting out into the sunshine as much as you can, and paying attention to our bone health can go a long way to keeping your bones strong. If you aren't already taking Vitamin K2, Vitamins C and D, and a safe level of calcium, I would encourage you to start. Also consider adding canned fish (with the bones) to your diet. I prefer Trader Joe's unsalted sardines prepared with lemon juice, olive oil and celery on crackers - delicious, as canned fish goes... lol!

Don't let yourself stay stuck in grief. Choose to be proactive, learn as much as you can about the disease, and then take good care of yourself and your bones. Good luck!

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@wilkenl
I take a multivitamin with vitamin c, d and calcium in it. I get 1200 mg of calcium through my diet daily and the supplement gives me an extra 200. I also take another 1,000 of vitamin D with my smoothie in the morning. I asked both Dr’s I’ve seen about vitamin K and both of them told me no. One of them scoffed at me and then suggested if I had money to waste to donate to his research and proceeded to show me his webpage. That was a hard pass. The Dr I’m seeing now just said there was no reason to take it. But a lot of people on here do. It’s one of those things I need to look into. Right now I’m trying to just get a routine of diet and exercise.

I try to eat fish or salmon weekly but sometimes it’s every other week. I never liked fish but am liking the whitefish and salmon. Growing up my dad would go smelt dipping and I have memories of cleaning those little buggers and the canned fish just gives me flashbacks. LOL

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Profile picture for wilkenl @wilkenl

@frog100 I had no side effects from the Evenity - thank goodness! I'm now on Reclast once each year to maintain the gains I got from the Evenity.

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@wilkenl I had reclast before with no side effects. So glad to hear no side effects from Evenity. I am slightly Leary. Thank for sharing

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Profile picture for gravity3 @gravity3

@frog100

Evenity gave me the best gains with no noticeable side effects.

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@gravity3 Good to hear some positive results. Thanks for sharing

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Profile picture for gravity3 @gravity3

@frog100

Evenity gave me the best gains with no noticeable side effects.

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@gravity3 I am all in to start soon. I understand you need to go on somet

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Profile picture for rudysmom @rudysmom

@gravity3
February this year I was diagnosed. Spine is -2.7 and hips -2.0. Yes I’ve been to 2 Endocrinologists and the one I liked has recommended Evenity. My BCBS denied it and Dr office has resubmitted it. I work out 6 days a week with a mix of walking and Dr Lisa Moore videos. Also track my calcium and protein on Cronometer app. My cause is menopause, small boned, hyperthyroidism and genetics. My mom’s hip broke when she was 84 and she passed a couple months after that. She also had other health issues it was just the last straw. Actually I don’t think she was treated for it. Dr said her bones were like Swiss cheese.

I think part of my problem is what happened to my mom and the realization that I’m aging. But keep reminding myself I’d rather be aging than the alternative.

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I haven't fractured and I haven't been careful, except I'm careful to remember to take teriparatide.

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@frog100: Diddo… on my 12th series of year-long Evenity injections. There is too much negative “black box” info out there. Yes, this is the newest osteo drug, but it is also the choice that offers best % of strong bone growth too!
It is a very difficult decision for most of us. My2cents is gather all the good/bad/indifferent opinions and make your decision. Then as you accept this treatment, do your part in accepting a few difficult days if necessary to gain your goal: better bones! Your positive attitude can help you attain what you want.
I have no complaints with Evenity!

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@rudysmom, I was diagnosed with scores like yours at age 47. I’m now 62 and my most recent DXA measured my spine at -3.5. I have not fractured in that time and I’m very active. I hike, lift weights (in an osteoporosis-focused strength training class) , do Zumba, and ski. Once in a while when skiing or hiking (or just walking on icy streets), I fall. Knock on wood, no fractures so far.

Last year, for the first time, I got a TBS (trabecular bone score) score with my DXA. It showed that I have normal bone quality. And when I run the FraxxPlus calculator, my risk of a major osteoporotic fracture isn’t especially high.

There’s more to your fracture risk than just a DXA score, so try not to let a score alone get you down.

My advice? Keep active. If you can find a Physical Therapist-led class addressing strength training for osteoporosis, take it. Work with a doctor who is interested in understanding the underlying causes of your osteoporosis. Make sure you have adequate calcium, Vit D, magnesium and Vit K2. Do your research so you can be knowledgeable advocate for yourself.

On top of everything else, I found that actively learning about osteoporosis and becoming focused on controlling the things I can (diet and exercise and which docs I work with) gave me a sense of forward movement and hope.
Wishing you the very best!!!

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