Are you on any medications for your PKU?

I do not have to be on medications (at least for now) for my PKU. The doctor says I keep my blood Phe target levels right where they are suppose to be with the specialized diet. There is a chance when I get older that it could change though.

Many things change when you get older so I would not be surprised by that at all. For me, so far I have been lucky, the only odd change I did have is when I moved to a new town (from the country to the city life) and my new doctor prefer I try a better medicine that has actually helped compared to what I used to take.

It is really quite surprising that you are not on any medication for your PKU. You must be following a very strict diet and adhere to it very well! Can I ask what exactly the diet is that you follow?

I have heard of it being done but your right meta. Those I know who manage on their own are under strict guidance of a nutritionists. And they also tend not to splurge on things they should not have the way some of us do… heh

There are several articles on the net that claim drugs are not necessary for PKU - that diet alone is enough to control it. They tend towards consiracy theory to explain the promotion of drugs for this condition, as the pharma companies can’t make money from people managing without them. Any opinions?

I’ve read quite a bit about the drug companies.  They do seem to be profit-driven, rather than health-driven.  I’m going with what my doctor recommends and right now she has me on medicine.  She’s also working with me on my diet.  I’m doing some research into herbs that might help on my own.