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.

Profile picture for anatomary @anatomary

I have known I have OP for five years; diagnosed right before covid...and the ball got dropped for numerous reasons. I have never fractured - and like many people at initial diagnosis, I was like, who me, osteoporosis; you have got to be kidding? I have always been active/athletic, eat well, etc. - but yes, my frame is small and am thin. At my first diagnosis I was told to stop running and begin walking - I did, but I had never been more miserable. I just felt tight -and think my back felt more painful - or stiff and rigid. I got a puppy during covid and needed to run around a bit with the little critter; my saving grace! I did not do ballistic running but short sprints here and there in the backyard - and yes, we walked. My back felt so much better after I started moving again. But no fractures, not even when the pup tipped me over when she hit me hard in the legs (from behind ) and I flew in air and landed flat-on my back. I laid there for a moment...maybe a minute or two but got up and felt fine. Maybe I didn't fracture because I didn't see her coming? - so I was relaxed and didn't brace myself.

My dexa showed lumbars as -4.5/-4.6...and L5 is -5! I didn't see that on my initial view; maybe a bit of dylexia...or was it delusion? Hips are -2.6. So while it is possible to avoid fracture - it is still a risk... I believe being fit, or not knowing for a long time I had OP and keeping fit has probably provided me with some prevention despite the risk of fracture. I am wondering if my previous scores would have been worse if I led a more sedentary life? BTW I was diagnosed with OP because I lost height and had reported diffuse back pain after long drives; I had to make long drives (3 hours plus) on a regular basis for work and following I felt uncomfortable - if not downright tight.

I joined the OP group in Mayo to make a decision about treatment. I have seen an MD bone specialist who recommends Tymlos, an Oncologist (had been diagnosed pre-cancer in breast called LCIS right after latest DEXA) who recommends Fosamax, and a PharmD who works with a specialist orthopedic office attached to spine clinic who recommends Evenity. Seems all specializations have their preference based on their specialties desired outcomes - so I asked my PCP is she could refer me to an endocrinologist. She has, and I spoke with that office, and we will be setting up an appointment soon. I am hopeful there might be consensus with someone but moreover I desire a more tailored, and monitored, approach over take this drug for a year and we will complete a DEXA and go from there. At present, I keep active (walk, garden, swim, and do alot of stairs) - and I also enjoy learning from Dr. Lisa Moore of Brickhouse Bones. I began taking Vitamin D (2000 units) as last bloods were a little low - and at that time I was getting ready for surgery to remove LCIS (prophylactic bilateral mastectomy) and it seemed reasonable to help boost the immune system before a major surgery. I eat a mediterranean diet (always have)- and now ensure I eat a lot of dairy to get my recommended calcium level. I do six prunes a day - three in the morning and three as dinner desert. I was referred to PT by my bone specialist to make certain I did not do, what I was not supposed to do, when gardening or lifting - and to strengthen my core.

I did consider trying to manage OP naturally - but to a certain degree I have done this for the past five years (from first diagnosis to this year) - while my condition has not worsened ...it hasn't improved. The "any non-fracture members" was intriguing to me since those of us who haven't fractured must be doing something right; and there will always be a question in my mind about OP and whether we need to boost our bones; our elders didn't...fractures, and even death following fractures. was just part of growing old and aging. Is risk of fracture mitigated by risk from treatment/medicines? I don't know...still deciding.

But I think I want meds for quick gains so that I don't have to have to think about risk of fracture as much. PLUS I am 64, not retired with good private insurance, and since no one knows what US medicare will look like in the future, it seems financially prudent to begin a pharma treatment path sooner rather than later. So hopefully I will not fracture before I get some gains. I just need to pick a poison... Good luck to all - and may we continue to be fracture free!

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@anatomary , This is an interesting video that talks about the different medications and combined/sequential treatment. It's from the OsteoBoston website which also has a lot of other good content from a number of speakers.

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Cheers - I'll view it soon!

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@rudysmom
Hi. I'm 82; my first diagnosis of OP was a number of years ago--I think somewhere around age 65. Basically, I've taken no pharmaceuticals (Fosomax very occasionally several years ago). Doctor says my scan shows a hairline fracture somewhere in my spine, of which I have no symptoms. No other fractures. I walk regularly, and the past few years have done some weight training, but not a lot. Also, in the past 3 years I've fallen a few times, no fractures. So far so good. 🙏

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I’ve had op for many yrs. I’m 69 now. No fractures. However, I have always been a very active jogger 5 days a week (1 mile), and daily exercises. The last two yrs I’ve added free dumbbells and ankle weights for my exercises. I’m a small boned petite woman -all the more danger. No op drugs. Eat healthy. The last 4 months started on estrogen patch. Last 2 yrs taking great vitamins and calcium with vit K.
Be encouraged…come up with a plan that works for you. Don’t jump into the first thing the first dr tells you to take. Read all side effects. Most importantly now is exercise and strength building to improve your balance and muscle strength so if you do fall your muscles can help protect the bones from taking the full bunt of force.

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Profile picture for sandy0257 @sandy0257

I’ve had op for many yrs. I’m 69 now. No fractures. However, I have always been a very active jogger 5 days a week (1 mile), and daily exercises. The last two yrs I’ve added free dumbbells and ankle weights for my exercises. I’m a small boned petite woman -all the more danger. No op drugs. Eat healthy. The last 4 months started on estrogen patch. Last 2 yrs taking great vitamins and calcium with vit K.
Be encouraged…come up with a plan that works for you. Don’t jump into the first thing the first dr tells you to take. Read all side effects. Most importantly now is exercise and strength building to improve your balance and muscle strength so if you do fall your muscles can help protect the bones from taking the full bunt of force.

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@sandy0257
I've considered the patch; small petite also - 72, had op since about 60, no meds, no fractures. Not as active as you but take good op supplements. Scary at first but prayer and common sense helps. Docs will try to push drugs, be your own advocate, your health.💞 Thanks for your inspiration!

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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 How long can you stay on Recast, and where do you go from there, that seems to me the million dollar question in all of this

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Profile picture for judyteresa @judyteresa

@sandy0257
I've considered the patch; small petite also - 72, had op since about 60, no meds, no fractures. Not as active as you but take good op supplements. Scary at first but prayer and common sense helps. Docs will try to push drugs, be your own advocate, your health.💞 Thanks for your inspiration!

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@judyteresa Hi Judy!

Thank you for your kind words. I appreciate that.

Yes, with using wisdom, good healthy living and God we will make it! Prayers!

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Does anyone know if Actonel is as effective for bones as fosomax ?

Are the results about the same ?

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I’ve been living with a diagnosis of osteoporosis for over 15 years. I started on Fosamax then, took it for 5 years then went to Prolia which I’ve been on for 10 years. I’ve tripped on the sidewalk and fallen, was fine. Then I slipped on a wet tile floor and broke a toe but anyone would have. I’ve never had a fracture. It’s definitely possible, and I’m about to turn 76.

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Profile picture for 2024tymloshelp @2024tymloshelp

Does anyone know if Actonel is as effective for bones as fosomax ?

Are the results about the same ?

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@2024tymloshelp this is an interesting question because the most cited study advancing the theory that Fosamax is more effective used 70mg alendronate (Fosamax) and 35mg risidronate (Actonel) I've read that Actonel is more bioactive and that given in equal doses the effect is equal, but I can't find study sources. I have been told, by the endocrinologist I see, that Actonel adheres less tightly to the bone than Fosamax and so stays attached to your bone for fewer years, making it advantageous for following the bisphosphonate with an anabolic medication.

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