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where I can get a list of recently been updated beyond drugs that can harm patients with Phenylketonuria
melida911 posted:
where I can get a list of recently been updated beyond drugs that can harm patients with Phenylketonuria?
would be possible to get a list of medicines that people with phenylketonuria (PKU). Patients with this condition can not take medicines containing espartame; Phenylalanine and protein also.
my son has this condition and in countless occasions the doctor prescribed him a drug that is a risk for people with this condition when I read the label I have to return it to the pharmacy and back to the office for me to change the prescription.

Elizabeth_WebMD_Staff responded:
Hi Melida911 -

This does sound very frustrating, I am sorry you and your family have been having to manage this on your own.

Does the pharmacy have PKU listed on your son's profile? I wonder if their computer system would alert if there is a conflict.

In a quick search I could not find specific meds listed, but I did find this great website, National PKU News . They not only have an extensive list of foods with links for recent updates and changes, but also info for traveling (even to Disney).

You may want to network with one of the support groups to see if a medication list is available or begin one with the help of this organization.

Please let us know if this is helpful,
Roy Benaroch, MD replied to Elizabeth_WebMD_Staff's response:
Agree with the above post. You'll definitely want to develop a relationship with your pharmacist. New medicines constantly come on the market, and old ones sometimes are reformulated. I don't know that there is a single list that's always dependable. A PKU support group would be the best place to network with other parents looking for this information.

Best of luck!

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