Changes to vitamin levels and enzyme need with modulators


Staff member
DS has been on Trikafta for several years and symdeco and orkambi prior to that. He's always had issues with low Vitamin D levels and not only does he take a CF multivitamin, but supplemental vitamin D once a day. Without the supplemental vitamin D, his levels were low. Imagine our surprise when recent tests showed HIGH levels of Vitamin D -- double the usual level. A & E were still normal. So we stopped the supplementation. Our clinic indicated we should do so as well, but also suggested fecal elastase testing as they've had 10 patients who no longer need enzymes. DS is SEVERELY pancreatic insufficient, plus based on 2 hour glucose testing it's pretty obvious his pancreas is severely scarred.

Just interesting to note that after being on a the triple modulator for just a couple years can cause such a difference in vitamin needs.