PKU.com Community Discussion Forum New to PKU.com New here…Adult w/ PKU Reply To: New here…Adult w/ PKU

#8538
Avatar of Nick
arkham
Member

Hi, I'm 36 and was off the diet for about 30 years.  I've been back on for about 3.

I definitely recommend going back on diet.  Even if you think you aren't having problems being off diet, it's worth being back on. 

I am on Kuvan, have been for about a year, and I've gotten my levels from around 12 prior to Kuvan to well below 6.  My most recent level was actually a 1.6.

Also, one of the big issues that has been discussed recently is the increased likelihood of osteoporosis in PKUers.  Off-diet, apparently low bone density is common, and on-diet, PKUers often don't get enough calcium.

I just had a bone density scan yesterday (should get the results tomorrow), and started a calcium supplement today.

One more thing to keep in mind.

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