orkambi and o2 sats

[carisabo]

i was wondering if anybody else experienced what I have. so my prior auth. didn't go through in time and I had a 2 week lapse in orkambi. I was on orkambi for year and half not missing a single dose. then I go two weeks without and once I started it back I had really bad shortness of breath and my o2 sats went way down to the point of severe head aches. I don't normally have an issue with low o2 during the day. I normally sleep with oxygen. I got admitted for 4 days because the dr. was worried. I did have the chest tightness at the very beginning of taking orkambi a year and half ago but it didn't last long. any help or advise would help. thank you

 

[triples15]

Hi Carisabo,

I'm afraid I can't be of much help, but wanted to say that I'm sorry you are experiencing this. We heard of many people experiencing some pretty extreme negative side effects at the start of Orkambi. It seems like for many folks they subsided with time, but for others the side effects were too extreme and they unfortunately had to stop. What's strange about your situation is that your experience is different the second time around. Is your lung function lower now than when you initially started it a year and half ago? I did read that often it was the folks in the lower function ranges that were experiencing more of the detrimental side effects. It would stand to reason that if you're feeling super short of breath and have fairly low lung function to begin with that your o2 sats may drop... I don't have advice, but I do know that some folks were starting with smaller doses and working up to a full dose to try to curb some of the side effects. Maybe that is something that could be an option for you? I so hope that these side effects are short lived for you and you are feeling better soon!

Autumn