So the recipe that I referenced in my last post did not come to fruition the way I thought it would, so it will be a bit longer before that appears.
As you can probably see from the title of my post, today I wanted to write a bit about PEG PAL. I recently was accepted into the Phase III trials for PEG PAL. The study that I am participating in will look at appropriate dosing of PEG PAL. Basically, they are trying to find the lowest possible dose that can be given for PEG PAL to be effective.
PEG PAL is an enzyme substitution therapy for PKU that is currently in its third and last phase of trials before it goes to the FDA for approval. PEG PAL would convert phenylalanine into two other chemicals (which I do not remember at this moment) that the body can process normally. It is different from phenylalanine hydroxylase, which is what non-PKU people produce, so it will not convert the phe into tyrosine. However, the effect would essentially be the same as if my liver produced the phenylalanine hydroxylase, minus the tyrosine. I am super excited about what this might mean for my diet, as well as for stability of my blood phe levels.
The clinic that is doing the study informed me the process is slow-going to start taking the medication. For four weeks, I will take one injection per week of PEG PAL, and then start taking it twice per week, then four times per week, until I am taking it daily. The reason for this is because the body considers the medication a foreign element and tries to fight it off, creating an allergic reaction response. By administering low doses of the medication once per week, the body can build up its antibodies and eventually the allergic reaction disappears (very similar to allergy shots, if you have ever had them).
I was hoping to be a patient that did not have an allergic response. Um, not so much. I was warned that joint pain and a rash were the most common side effects. My knees were achy all day long yesterday, as well as my hips. Luckily, I woke up this morning with minimal aches, and *knock on wood* I haven’t had a rash. My hope is that my body builds antibodies quickly so that this gets better, not worse.
Despite some achy knees and hips (I sounded like a little old lady there!), I am still so excited to be a part of this trial. The hope is that PEG PAL will allow for a decrease in blood phe levels as well as an increased phe tolerance, and if that happens, a few achy days might just be worth it. 🙂