update with PEGPAL!!!!

update with PEGPAL!!!!

Avatar of Mary Caite

update with PEGPAL!!!!

November 8, 2011 in Uncategorized

hi! my names Mary Caite :) i have classical PKU and i made a previous blog about a new drug called PEGPAL. This is just an update on how im doing and where i am in the trial since many cannot wait for results! I have been on the drug since august of last year, and have been slowly increasing the dosage to match the amount i need to go completely off diet! Right now, i am injecting myself with 4 shots of an enzyme on monday, and friday. My levels have been hovering around an 11 to about 15. This is without formula and on a loose diet. [aka: not weighing or keeping track of food, but still no meat or high protein foods]. they are really close to telling me to go off diet! my levels have recently went from a 21 to a 4!!! and they havent been a 4 in 15 years! ill keep you guys updated if you have any questions just comment and ill get back to you ASAP!!!!!!!!!!!

5 Reviews of update with PEGPAL!!!!

  1. Registered: Aug 11, 2009

    Posts: 0

    , Utah

    Wait… This is real?!?! Omg! My doctors keep lying to me about this stuff!!! Wow no Formula!! I would <3 that!!! Wow your Really lucky!!! I just went off my diet cause well my doctors suck and its only untile new years BUT I am now going to ask about that!! Even if it is a shot… *shiver* I hate needles but it would be worth it!!!

  2. Registered: Feb 23, 2007

    Posts: 0

    West babylon, New York

    yeah! its completely real haha its just still in the clinical trial and process to get passed by the FDA and go on the market lol

  3. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    i wonder if insurance will cover the treatment? i am so excited for my (only 2 year old) son to be able to have some shots and eat whatever he wants! this is such a great thing in the process!~!!!

  4. Registered: Feb 23, 2007

    Posts: 0

    West babylon, New York

    well, my doctors said its a good possibility that the insurance will cover it because instead of the treatment being a formula its an actual medication

  5. Registered: Jun 3, 2011

    Posts: 0

    vancouver, British Columbia

    jenn said on May 21, 2012

    Hows everything going with pegpal?

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional