The euphoria over E going off insulin for her CFRD was short-lived. While her sugars are much better, she has started back on insulin. That’s the bad news.
The good news is that she is taking much less insulin and only at certain times of the day. Right now, she doesn’t take basal insulin at all, as her fasting sugars remain normal. For some reason, regardless of what she eats for breakfast, she almost always has a spike around 230 an hour later, followed by a low before lunch. So for now, she is only taking an injection of fast-acting insulin with breakfast. This makes us a little sad, but it still is a huge improvement over where we were before Orkambi.
E’s doctor wants her to enroll in a clinical trial of a new medication that is taken in conjunction with Orkambi, and it is supposed to help Orkambi be more effective. I will continue to keep you posted.