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Cindy
Drug dosages
Wed Jul 14, 2010 11:13
66.215.15.40

Hi Nadia,
The dosage of sodium phenylbutyrate increases with weight. The dose is based on mg/kg per day of body weight, so as one increases in weight,the dosage increases. Once the individual gets to a certain age and weight, the dose is then calculated on grams/meterssquared (sorry, can't type a superscript 2 on this) so that you are dosing body fat. For example, if you had a child or adult that was 10 pounds overweight, if you used the mg/kg/day of body weight calculation, the child would get too much drug. The grams/meterssquared calculation calculates body surface area so that the dosage is more precise. The dose is also dependent upon the individual's own enzyme activity -- the less urea cycle enzyme activity the individual has, the more drug they have to take. (So, the more severe mutation, the more drug required to help them remove ammonia). The adults take up to even 40-50 tablets a day. The reason we worked so hard to have HPN-100 developed was to ease the burden of administering the drug (G-tubes, NG-tubes, taste of the powder, number of pills, etc.) and to have less side effects than sodium phenylbutyrate. Once HPN-100 is approved in the U.S., we will be pushing to get it approved in the UK and Europe as soon as possible. Give sweet A. a hug from me. Best,
Cindy (NUCDF)

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  • New Medication TrialRebecca, Thu Jul 1 12:07
    Anyone have a child (or themselves) in the new medication trial that will hopefully replace Buphenyl? My daughter has been asked to participate and just wanted some first hand experiences.... How is... more
    • New Medical Trial HPN 100Ofishallie, Sun Jul 4 00:59
      Hey Gang, I am in the trial. Was first in double blind in February and then started trial in March 1, 2010. Drug is 100% better than the old buphenyl. Does not burn esophagus or stomach. I go in once ... more
      • Re: New Medical Trial HPN 100nadia, Mon Jul 5 04:18
        Hi Ofi how much of the medicine do you have to take a day? is the dosage a lot oless than sodium phenylbutyrate and how many times a day do you have to take it? my son has to take his 3 times a day
        • HPN DosageOfishie, Tue Jul 13 12:10
          THe HPN-100 is liquid. I take .580ml with 3 meals a day. Better than 48 pills.
          • Re: HPN Dosagenadia, Tue Jul 13 16:26
            i am shocked you have to take so much medicine. i suppose thats the down side to these illnesses the medicine alweays increases and never decreases. i spopke to our team here the nurses hav not heard ... more
            • Drug dosages — Cindy, Wed Jul 14 11:13
              • Re: Drug dosagesnadia, Wed Jul 14 14:43
                Hi Cindy, thankyou for your message it will be brilliant once it has been approved and we have it in the UK as we struggled a lot when my son had to take phenylbutyrate. Willt he dosage of the new... more
                • Buphenyl and New FormulationCindy, Wed Jul 14 15:18
                  Hi Nadia: The average dosage for the new drug is about 2 teaspoons a day. It is a tasteless, odorless liquid. One of the needs for its development was to address the problem of our children... more
        • for nadiamarta, Tue Jul 6 11:15
          Hi Nadia, i heard even though i am not on it that it is like one teaspoon once a day. this is what my metabolic dr said anyway. are you part of the trail? I HEARD that it is hard to be a part of.... more
          • Re: for nadianadia, Tue Jul 6 14:03
            no we are not part of the trial, we're in england and havnet even heard anything about this trial i am going to ask our metabolic doctor next time we go to clinic. does anyone know how long it will... more
            • for nadiamarta, Wed Jul 7 11:24
              Nadia, i know it goes through it's trai period then it has to be fda approved before insurance will pay for the medicine. not sure though. marta
    • Clinical Trials for HPN-100Cindy, Fri Jul 2 22:00
      Hi Rebecca, The adult patients and parents of children in the clinical trial report to me that they are very happy with HPN-100 and cannot imagine going back to Buphenyl. The point of encouraging the ... more
      • Adult TrialOfishy, Tue Jul 13 12:12
        I am on the adult trial. Any one that has questions can reach me at ucdsurvivor@gmail.com You can use this Cindy.
        • Adult TrialCindy, Tue Jul 13 12:30
          Thanks much! Can you email me off list?
    • new medication trailAnonymous, Fri Jul 2 12:09
      Hi Rebecca, I am a women born with citrullinemia. i was on buphenyl until it caused me me ulcers and problems with taking it so more times then not i would not take it and end up in the hospital with ... more
    • Re: New Medication Trialnadia, Fri Jul 2 06:25
      hi wat is the new medicine please? whats the name
      • New MedRebecca, Fri Jul 2 15:52
        The new medicine is in the clinical trial stage - not approved by FDA yet. It is called HPN-100. It is an oil based medication - we are possibly going to enter the study just wondering if anyone had... more
        • Re: New Mednadia, Fri Jul 2 17:51
          thanks for the info thats really good news as it is hard to administer the medicines as we have experienced. my son has been taken off phenylbutyrate and ony had sodium benzoate and arginine. sodium... more
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