Well hello, again, everyone! I know I promised to update you all on my last appointment, but since then I have not had access to the Internet. For that I am sorry. I have noticed a steady amount of page views everyday since my last post, and I am guessing that some of you are interested in how it went..... so here goes.
When I went up to my appointment ( I say went up because it is a 4 1/2 hour drive north) they had scheduled me for both a physical with the nurse practitioner and a regular appointment with my metabolic specialist. My physical went great, good blood pressure and everything. Of course they did blood work to test all my levels, but we will talk about that a little later.
In my appointment with the Metabolic Specialist we talked about Kuvan. She agreed that I am a good candidate for it. She had me fill out all the paperwork for a trial. We discussed my insurance because she was concerned about the copayment. I had no idea how outrageous the price of Kuvan was.
Kuvan is $37.00 per pill. That would already be expensive if I only had to take one a day... But I would have to take 18 pills a day!! That is $666.00 per day for me to take this medication!! Now if that isn't crazy I don't know what is.
Like I mentioned before, I filled out the paperwork for a trial of Kuvan. In studies they have done, the results show that not all candidates are responsive to the medication. They can't even say that a certain mutation of PKU will respond. Therefore the 4 week trial is how they determine whether or not you respond.
I got a call the other day from a representative of Biomarin (the company that makes Kuvan) to set up my free trial. They are so efficient that they want to send the representative (I cannot remember her name) up to see me before my trail. She is going to hand deliver the medication to me and help me set up a routine to take the medication and regulate everything else PKU related.
My husband and I have talked about it and we think it works best for us that I start this trial of Kuvan at the beginning of the year. I will keep you all informed when it gets closer.
Until Next Time,
Phe
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