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From:
eric mainz <[log in to unmask]>
Reply To:
eric mainz <[log in to unmask]>
Date:
Sat, 4 Dec 2004 23:54:33 -0600
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hello List,
 
Sorry for the delay in posting the summary. I wanted to meet with a
metabolic bone disease specialist before responding, in case anything he
had to say was useful to someone out there. 
 
I had posted a request for any first-hand experience with Zomatec,  an
IV drug used to treat advanced cases of osteoporosis. The drug was
recommended for my 18 year old son, whose early history included
autistic-like tendencies and more recent history includes kidney
disease---and now osteoporosis. ( Since he was 3, he has responded well
to a gluten-free, casein-free diet.  The kidney disease surfaced about
three years ago and was treated with prednisone and cyclosporine for 1
to 1 ½ years, before discontinuing.  )
 
I got three replies, one asking me to summarize, and two from another
poster describing her experience using Pamidronate, another IV drug for
osteoporosis.  She reported that Fosamax had given her headaches and
Actonel gave her nosebleeds and sores. She started Pamidronate IVs at
the end of 200l and has taken 2-3 IVs per year since.  It took two years
to raise her bone density, but I’m not sure to what extent.  I
appreciated her response.
 
I did not hear from anyone with experience using Zomatec, but will
report what I have learned.  It is zoledronic acid, an inhibitor of
osteoclastic bone resorption.  It is 15 minute IV given over 2
successive days, with additional doses every 3 months.  It is considered
an acceptable alternative to Forteo, which is essentially parathyroid
injections.  Forteo is contraindicated in anyone with moderate to severe
renal dysfunction, because parathyroid levels are already too high in
people with kidney disease.    
 
While Zomatec was described as a pretty effective “glue” (in effect) for
fragile bones, it also carries the risk of further renal damage, which
is of course carefully monitored, with dosage adjustments as necessary.
Since our son does not have any fractures, we opted—with the
specialist’s support-- for a more conservative, natural approach at this
point, with checkups every six months.  As far as his bone health is
concerned, he is on both “active” and standard forms of vitamin D,
increased calcium, somewhat reduced magnesium (apparently a problem for
the kidneys), plus cod liver oil and hydrochloric acid tablets to
increase calcium absorption.  He is also following a Tufts University
program of weight-bearing exercise for osteoporosis patients, as
outlined in Miriam Nelson’s book Strong Women, Strong Bones.   (Most of
it applies to males too!)  Any other suggestions/ideas would be welcome.
 
Eric 

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