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Medical Forum / Diseases and Disorders / Epilepsy / September 2004

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CURIOUS!!!!  Please read....

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Jil - 27 Aug 2004 21:45 GMT
I have been on phenobarbitol for 21 years with much success.  My levels were
raised for both my pregnancies, and never came down after my last daughter
(doc says blood flow increases in general after birthing).
 For you:  What can I expect in terms of long term damage to my body??
Like, am I more likely to die earlier than most kind-of-thing, from
something associated with my meds (i.e. Liver, etc).
 Just decide the web doesn't give much info on long term damage, maybe it's
just not a big deal, I hope?
 Anyhoo, thanks, JIL
Grannygoos01 - 28 Aug 2004 14:56 GMT
You really need to find a copy of a true PDR, and read the fine print near the
section called "Contraindictions" Continual use of phenobarb can attack your
bones.

I too used phenobarb for many years and now am unable to walk 100 yards due to
destruction of my bones. It has made me unemployable for nearly 15  years now.

Good luck to u
gaross - 28 Aug 2004 16:30 GMT
> You really need to find a copy of a true PDR, and read the fine print near the
> section called "Contraindictions" Continual use of phenobarb can attack your
[quoted text clipped - 4 lines]
>
> Good luck to u

 A contraindication is something the **might happen.  The fact that someone
has a reaction to a particular medication, will not confirm that **all
others will.    While some medications might have contra-indications
(Tegretol might attack calcium, but I've used it for 8 years with no
effect) -- the fact it might do that on one person is not a predictor it
will for others without more statistical data.
  Without having used it,  phenobarb has been in use for 70? or more years,
and the Doctors read 'the fine print', and have the test results accumulated
over that period.    They would be in a better position to know if xxx% of
users might be prone to a side effect, and even know in many cases what the
markers might be (now) for that side effect.
   It's unfortunate it didn't work for your case.     The fact it didn't is
not a Predictor that it will or won't work for Jil, another Newbie....   I
think Phenobarb is used in UK? similar manner as Dilantin is used in other
locations for some types of seizures, as a First Try Medication.    If it
works, it's cheaper and longer studied than some newer medicines.  If it
doesn't work,  people might have to try something stronger and newer so more
expensive and less studied.   G.
WantingToBeInPA - 01 Sep 2004 02:33 GMT
I have used phenobarbital for 28 years nad have 2 children and my dose is 300mg
per day.  I am maxed out on that and added keppra at 2000mg per day!  I have no
bone problems and I am out of shape and overweight but I can walk 3.5 miles to
work if need be.  It takes me a while but I get there and I am not in any pain!
Please remember that anyone that posts on here is stating their opinion and no
comments should take the place of your doctor's advice...afterall they went to
the school.  I just started med school so I will be there soon.
Karen
Co-Founder of Epilepsy Advocates
http://www.angelfire.com/80s/karenelaine75
 
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