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 gently @gently

@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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Ok thanks -
I have written questions here before and you have been helpful.
I am finishing Tymlos ( 2 years) soon and I am so confused/concerned which drug to use next . Neither of my doctors seem confident in recommending one drug or another .
I want to choose the drug with the least serious side effects and the least chance of hurting my heart , losing my hair and teeth!

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I hope this helps ease your mind. I’m 68 years old, diagnosed with OP 10 years ago and fracture free. Weight bearing exercises seem to keep my numbers in check.

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Profile picture for 2024tymloshelp @2024tymloshelp

Ok thanks -
I have written questions here before and you have been helpful.
I am finishing Tymlos ( 2 years) soon and I am so confused/concerned which drug to use next . Neither of my doctors seem confident in recommending one drug or another .
I want to choose the drug with the least serious side effects and the least chance of hurting my heart , losing my hair and teeth!

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@2024tymloshelp,
I'd have bone markers CTX and P1NP at the finish of Tymlos. If the bone markers are balanced at the finish I'd want another year of Tymlos. If CTX is out pacing P1NP, I'd redo bone markers after a one month holiday and reassess. At one month I'd expect CTX to drop and P1NP to drop less significantly. If the month has rebalance the bone markers, I'd want another round of Tymlos. If the bone markers remain CTX high, I'd take Actonel for as short a period as possible, always checking the bone markers for the opportunity to return to Tymlos or Forteo.
If your dexa gains have been insufficient you might consider 6 months of Evenity, after which you could return to Tymlos or Forteo.
Personally, I'm passing on Evenity for the cardiac reasons.
If you were unhappy on Tymlos that changes all my Tymlos suggestions to Forteo.
Anyway I'm on Forteo and that is my researched plan. I'm on my fourth year of Forteo without any risedronate, as yet.
You could take risidronate for a year or two and then return to either of the pth drugs.
Your jawbone is safe, not sure about hair.

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Profile picture for gently @gently

@2024tymloshelp,
I'd have bone markers CTX and P1NP at the finish of Tymlos. If the bone markers are balanced at the finish I'd want another year of Tymlos. If CTX is out pacing P1NP, I'd redo bone markers after a one month holiday and reassess. At one month I'd expect CTX to drop and P1NP to drop less significantly. If the month has rebalance the bone markers, I'd want another round of Tymlos. If the bone markers remain CTX high, I'd take Actonel for as short a period as possible, always checking the bone markers for the opportunity to return to Tymlos or Forteo.
If your dexa gains have been insufficient you might consider 6 months of Evenity, after which you could return to Tymlos or Forteo.
Personally, I'm passing on Evenity for the cardiac reasons.
If you were unhappy on Tymlos that changes all my Tymlos suggestions to Forteo.
Anyway I'm on Forteo and that is my researched plan. I'm on my fourth year of Forteo without any risedronate, as yet.
You could take risidronate for a year or two and then return to either of the pth drugs.
Your jawbone is safe, not sure about hair.

Jump to this post

@gently you know helpful info ! Thanks!
Do doctors now think it’s ok to do anabolics for more than 2 years ?

REPLY
Profile picture for gently @gently

@2024tymloshelp,
I'd have bone markers CTX and P1NP at the finish of Tymlos. If the bone markers are balanced at the finish I'd want another year of Tymlos. If CTX is out pacing P1NP, I'd redo bone markers after a one month holiday and reassess. At one month I'd expect CTX to drop and P1NP to drop less significantly. If the month has rebalance the bone markers, I'd want another round of Tymlos. If the bone markers remain CTX high, I'd take Actonel for as short a period as possible, always checking the bone markers for the opportunity to return to Tymlos or Forteo.
If your dexa gains have been insufficient you might consider 6 months of Evenity, after which you could return to Tymlos or Forteo.
Personally, I'm passing on Evenity for the cardiac reasons.
If you were unhappy on Tymlos that changes all my Tymlos suggestions to Forteo.
Anyway I'm on Forteo and that is my researched plan. I'm on my fourth year of Forteo without any risedronate, as yet.
You could take risidronate for a year or two and then return to either of the pth drugs.
Your jawbone is safe, not sure about hair.

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@gently Would you please explain if the CTX and P1NP are balanced means? Maybe an example? Thanks!

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bluebonet242,
my last markers were CTX 532pg/mL and P1NP 158 mcg/L to get ratio divide 533 by 158. I end up with 1mcg/L P1NP to 3.36pg/mL the scale that makes the most sense to me is that at CTX 2.5pg/mL to 1 mcg/L we are building more bone than we are losing. At 5 to 1 we are probably even. Above 5 we are probably losing bone. So balance for me would be between 2.5 and 5 pg/mL to 1mcg/L

You probably already know that the CTX number is a surrogate number for bone resorption. It measures actual fragments in the blood when bone breaks down. P1NP is a count of fragment left in the blood when Procollagen type 1 is cleaved to fit the space vacated by resorption.
To get accurate numbers you can't have recently broken a bone because that will elevate CTX. You need to have a same time of draw and it has to be in the morning, fasting. I avoid b vitamins, but biotin has to be avoided and collagen supplements for several days before the draw. And you shouldn't exercise before the draw.
Some people like to convert pg/mL to mcg/L . They can use the scale I use. Doug Lucas explains his conversion and scale. This is an interesting link. https://www.youtube.com/watch Lucas is a good salesman; don't buy anything.
I'm not always clear, so please ask me to clarify.

REPLY
Profile picture for gently @gently

bluebonet242,
my last markers were CTX 532pg/mL and P1NP 158 mcg/L to get ratio divide 533 by 158. I end up with 1mcg/L P1NP to 3.36pg/mL the scale that makes the most sense to me is that at CTX 2.5pg/mL to 1 mcg/L we are building more bone than we are losing. At 5 to 1 we are probably even. Above 5 we are probably losing bone. So balance for me would be between 2.5 and 5 pg/mL to 1mcg/L

You probably already know that the CTX number is a surrogate number for bone resorption. It measures actual fragments in the blood when bone breaks down. P1NP is a count of fragment left in the blood when Procollagen type 1 is cleaved to fit the space vacated by resorption.
To get accurate numbers you can't have recently broken a bone because that will elevate CTX. You need to have a same time of draw and it has to be in the morning, fasting. I avoid b vitamins, but biotin has to be avoided and collagen supplements for several days before the draw. And you shouldn't exercise before the draw.
Some people like to convert pg/mL to mcg/L . They can use the scale I use. Doug Lucas explains his conversion and scale. This is an interesting link. https://www.youtube.com/watch Lucas is a good salesman; don't buy anything.
I'm not always clear, so please ask me to clarify.

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@gently Thanks so much for the explanation!

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Hello Everyone. I am new to the OP diagnosis as well. Actually found osteopenia but close to the osteoporosis parameters in my routine DEXA. I must say it threw me for a mental loop as well. I have always been physically active (lived, worked and taught in the exercise world, a retired RN). After a complicated and still bothersome knee replacement 5 years ago which put a huge kibosh on my weight-bearing activities, I wasn’t surprised that the scan showed significant changes. Unfortunately I am facing a 3rd cervical neck surgery secondary to a hard fall (my balance is not good because I cannot engage my quad to lift and pivot well because of the knee). And, yes, I went to many series of PT, did my home programs, etc even aqua therapy. All thru this journey and thru numerous falls, I have never had a fracture. Because of my DEXA scores and upcoming cervical neck surgery, I started Tymlos 2days ago. I certainly don’t want hardware failure with this one…. I read on this forum many who have had experience with titrating the dose upwards gradually and opted to approach my dosage administration that way. I realize two days at a low dose is not a ‘real’ trial but at least I had no hypotension, headache or anaphylaxis! I thank everyone who has posted experiences here…

I am also concerned about weight gain. My smaller frame cannot handle the extra weight load. I already began this after the years of sedentary (for me) life a few pounds over what I should be and have not been at my ideal weight since I turned 50. I am now 73. But looking on the positive side, I keep thinking that God gave me this extra padding to help protect against fractures. I am not, however, relishing looking in the mirror and seeing my profile as wide as it is tall! Hopefully, I can keep my sense of humor and continue to look on the positive side! Blessings to all of you and thank you for ‘listening’…

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You’re making good choices! You’re obviously educating yourself on OP. I’m 61, no fractures.

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Profile picture for 2024tymloshelp @2024tymloshelp

@gently you know helpful info ! Thanks!
Do doctors now think it’s ok to do anabolics for more than 2 years ?

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@2024tymloshelp
That’s what I was told yesterday by my endocrinologist. It’s the first time I heard that.

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