KUVAN Reviews

Average Rating: 3.0 (2 Ratings)

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Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)

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RATING  REASONSIDE EFFECTS FOR KUVANCOMMENTSSEXAGEDURATION/
DOSAGE
DATE ADDED
 
 2  Diagnosed with PKU Started off feeling a blockage or lump in my throat mainly when sick and my immune system was struggling. Slowly started having episodes of Anaphylaxis to the point where I couldnít breathe and I thought I was gonna die. Hard to justify taking this medication when considering the cost (240K yearly) and the efficacy of the product ( Only lowered my PHE levels 30%). However I still stuck to it for nearly 10 years. Note: I havenít been on a low protein diet since I was a toddler. Once the anaphylactic episodes kicked in I stopped taking Kuvan. Been off Kuvan for 8 months now and no more anaphylactic episodes. M 48 10 years
20 mg/Kg
11/11/2019
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 4  PKU ADHD Slight stomach cramp Before taking Kuvan my son was taking Adderall XR for ADHD which was associated with his PKU. He was taking 40 mg of Adderall XR and was experiencing a number of the unwanted side effects which can be associated with higher doses of Adderall. After starting Kuvan we were able to progressively reduce the amount of Adderall over time. At this point he is only taking 15 mg of Adderall XR. Subjectively this seems a little on the low side and it is likely his next prescription for Adderall XR will be 20 mg. Clearly Kuvan has been effective in reducing the amount of Adderall needed and we have seen many of the side effects associated with Adderall decline in line with the reduction in dosage. With this said, I think it's important for individuals who are taking Kuvan and are considering either a stimulant or a non-stimulant medication for associated ADHD to clearly review the dosage with their doctor as this may vary from the dosage recommendations for those patients having ADHD but not diagnosed with PKU. It's my experience that the physician prescribing Adderall for ADHD is most often not the physician prescribing Kuvan for PKU. With this said your ADHD prescribing physician may not have any understanding of the relationship between PKU and ADHD and the possible interactions between Kuvan and the prescribed ADHD medication. I go out of my way to ask these physicians how much they understand regarding the above and to the extent they are ill-informed I require them to communicate M 16 8 months
1100 1X D
11/15/2012
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KUVAN  (SAPROPTERIN DIHYDROCHLORIDE):  This medication is used along with diet changes for long-term treatment of a certain inherited disorder (phenylketonuria-PKU). It helps remove a certain chemical (phenylalanine) from the body. Too much phenylalanine in the body can cause brain damage.   (Sources: U.S. Centers for Medicare Services, FDA)

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