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 a month for blood tests and EKG. So far all okay. In fact, seems to be lowering Blood Pressure too.
The only hassel is getting up to make may 8:00 a.m. appointments at hospital and remembering to take the medicine (grin, it is easy to be lazy).
I would say that if any one has the opportunity to move to the new drug....go for it. It has less salt and does not destroy your esophagus and stomach.
Now I have damage that exists from prior to being treated for OTCD--it does not make that go away. But it sure is better than the 48 pills I was taking and keeping all the pills stacked up around the house.
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 100 Ofishallie,Sun Jul 4 00:59
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
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 ... more
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
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
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
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
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
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
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