Community Discussion Forum Adults and PKU on the KUVAN trial and want 2 try for a baby soon Reply To: on the KUVAN trial and want 2 try for a baby soon

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Can’t you just speak with your doctor/dietitian and tell them that you would like to become pregnant and your stopping Kuvan for now?
I was in a trial for Kuvan that started in October. It ended in late February but because Kuvan was approved by FDA by then I have been able to continue taking it. Around Christmas I was considering going off of Kuvan. Of course I wasn’t considering going off for pregnancy, I think that would scare my mom . My doctor and dietitian were very supportive of whatever decision I was going to make. Basically their attitude was whatever makes me happy makes them happy. In the end I decided to stick with Kuvan for now and I’m allowed 1000 mg of phe with my levels usually around 4mg/dl (or 240 in micromoles).
I personally don’t know much about Kuvan and pregnancy, but I know that Dr Koch has had about 5 woman on Kuvan while they’re pregnant. I know that isn’t a huge crowd, but it’s a start and all research has to start somewhere right? All of their babies were born healthy. I would think you would be fine to try to concieve once your levels are back into normal range while you eating your original phe allowance.
Anway, hope this helps! nBre 16 CPKU

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