I have osteoperosis now

Discussion in 'Vitamins & Labs' started by southernlady, Mar 11, 2014.

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    southernlady

    southernlady Administrator Staff Member

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    Went from Osteopenia back in Oct 2011 to full blown osteoporosis.

    My PCP is suggesting Prolia...looked it up, don't care for the side effects listed.
    I'm thinking I need a different option here.
     
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    Spiky Bugger

    Spiky Bugger Well-Known Member

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    Me, too. If you'd rather die from something other than having your jaw rot and fall off (bisphosphonates) there's Forteo...but I think that may be a difficult drug for us.

    Let me know what you learn...I'm in the same boat...just graduated to osteoporosis...and my mom had a pretty brutal case, so it is worrisome.
     
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    southernlady

    southernlady Administrator Staff Member

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    My Mother had a bad case of it as well...even had the "dowager's hump"...lost about 3 inches as well.

    I am thinking he's looking at the fact that I am post menopausal.
     
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    southernlady

    southernlady Administrator Staff Member

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    I'm gonna tag @MajorMomMajorMom on this one...she's been successful here.
     
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    Spiky Bugger

    Spiky Bugger Well-Known Member

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    Yeah...I'm 37 years post-menopausal, with a hx of smoking, and no HRT, and some other risk factor...but a friend had a family member who got cancer in the jawbone and lost it completely on Fosamax, so I have met one of the"rare" cases, and its hard to remember the "rare" part.
     
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    southernlady

    southernlady Administrator Staff Member

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    No history of smoking (at least first hand but decades as a second hand smoker), Just in the last few years went post menopausal as they had to check with blood tests and only the last one 2 years ago gave me a final YES. But haven't gone any HRT...symptoms never bothered me.

    I didn't completely fit the high risk category til after WLS...
    Now the controllable ones are different. The DS life doesn't lend itself to avoiding it:
    Sodium is not a problem and I don't drink alcohol at all. But I do NOT function well without my coffee.

    The odd thing is my D is high normal (BY normie standards), my calcium is in line and my PTH was on the low side of normal.
    Told dh I wanted to add K2 to the mix.
     
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    huneypie

    huneypie Wannabe

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    Yes, Gina advises 600mcg of K2. Are you strontium? Boron? Magnesium citrate in a 2:1 ratio? What I should say is what are you currently doing?
     
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    huneypie

    huneypie Wannabe

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    Biotech K2 MK7 that is.
     
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    Bagaof4

    Bagaof4 Well-Known Member

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    Aaaccchhh!!! I have so many uncontrollable factors as well! Following your lead, Liz! :dontknow:
     
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    brooklyngirl

    brooklyngirl Yankee gone south

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    Blech that sucks Liz, hope you find something that helps!
     
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    k9ophile

    k9ophile Well-Known Member

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    What have you heard about Forteo? Difficult how?
     
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    Spiky Bugger

    Spiky Bugger Well-Known Member

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    aaa

    aaa Well-Known Member

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    I had the Reclast Infusion last May. Have you looked into it? My endocrin. specializes in osteo. issues and consulted with others who have had DS patients [and my surgeon] and due to the malabsorption they felt it was the best.

    I didn't love and it and had a very hard time with it. I will be meeting with her again within the month to discuss it and whether or not to do it again (apparently, it's supposed to be easier the 2d time around).
     
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    southernlady

    southernlady Administrator Staff Member

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    Much of my decision will be based on what the copay will be for me. I know I need to handle this but my options may be limited in that respect. Being on a Medicare Advantage policy limits what drugs are in my formulary. Up til now, I only worried about two...both my thyroid meds.
     
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    MajorMom

    MajorMom Active Member

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    I took Fosamax for about a year. (a.k.a. rat poison) The year I was on it my D dipped and my PTH rose. When we checked my osteocalcin it was below range as if there was no regeneration going on at all, much like concrete. I had no change on my dexa scans in that year. I stopped the Fosamax, started increasing the vitamin K2 to 600mcg a day, and kept with 100K D3 every other day, 50K the other days, a magnesium citrate capsule with every calcium dose, 3,600mg of calcium citrate via capsules- not tablets, a boron tablet with every calcium dose, and stayed with 2.5 Estratest hormone replacements. Last dexa scan improved to osteopenia and I need to get one this year to see if the improvement is continuing.

    I would try an increase in the vitamin K2 and the other things listed above. Try it for a year and see if you can slow or stop the bone loss. If not, bring it to a screeching halt with the heavy hitters for a year and then try to come off.

    Vitalady/BioTech capsule for K2, calcium citrate only, D3, magnesium citrate.
     
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