Discussions tagged “Diet”

I've been prescribed Kuvan 100mg Powder For Oral Sol for my PKU. I'm trying to get a plan together now, but all the info seems overwhelming. I know Kuvan helps break down phenylalanine, but I'm scared of the side effects. I've heard of a lot of people who are taking it and managing a lot of the common problems. What has been your experience and how do you manage it? Is it really as hard as it seems to manage the diet portion? Any tips on planning meals or taking the medicine?

I've recently started taking Orfadin 5mg Capsules to manage my Hereditary Tyrosinemia Type 1 (HT-1). Along with the medication, I've had to switch to a special low-tyrosine and low-phenylalanine diet. Does anyone else have experience with this? I'd love to hear about your journey, challenges, and tips for managing side effects. Specifically to start with, how much have you found that the medication has changed your symptoms?