I am from the UK with Classical PKU. I have recently approached my dietician to ask if I could take Kuvan. The first reaction I got was Kuvan was for a very different type of pku- milder form. So this has continued with an argument against using the drug.
I have also been told by my dietician that there are serious side effects and evidence to support using the drug is very limited. From what I've heard which has been positive, I should at least have a go to see if I respond and seems a relatively safe drug.
I hope to hear views from anybody who has tried Kuvan or having difficulties getting to use Kuvan. Would be good to hear from anyone with Classical PKU who has tried Kuvan and has lowered their phe levels.