Thursday, February 16, 2017

Restarting Orkambi

Due to issues with my pharmacy I did not receive my January shipment of Orkambi on time. Of course, I was upset that due to issues with my pharmacy and their lack of organization and communication was causing me to miss medicine that is beneficial to my body. But the reason I was most upset is that when I started Orkambi I had a lot of issues with side effects specifically chest tightness and shortness of breath. I was very concerned that restarting my Orkambi would bring back some or all of these side effects.

When I finally received my Orkambi I was so relieved that I wouldn't have to fight Accredo anymore. I momentarily forgot my concern with side effects. I was abruptly reminded of this concern a few hours after taking my morning dose. Although the side effects weren't nearly as intense as when I first started Orkambi I did notice a huge difference in my breathing pretty immediately. I often felt as if someone was sitting on my chest. I also had random sporadic bouts of extreme shortness of breath that seemed to come out of nowhere and disappear just as mysteriously. The biggest issue I had was I was too short of breath to exercise efficiently so I felt like my lungs weren't getting cleared properly by swimming which seems to be my best defense against mucus build up.

The side effects only lasted about fours days and yet after they subsided my lungs felt congested and heavy. I currently feel like I am on the brink of an infection. I will never know 100% if stopping and restarting Orkambi caused this infection, but I do think adjusting off and back on was really stressful to my body. I also think missing/more lax workouts didn't help the mucus build up nor did the tightness caused by restarting Orkambi. I seriously hope that I am never forced to go off of Orkambi again unless a new and improved drug comes out.


  1. I am furious that your health was impacted by pharmacy/insurance incompetence.

    Wonder what a lawyer would say about what happened?

    I'm so not a *sue them* type, but this is just wrong.

    I hope your are feeling better soon.

    1. Thank you for the well wishes.

      It is so frustrating because I am sure other patients are experiencing the same types of issues. As patients our insurance dictates which pharmacy we can use so regardless of service we are stuck. Sigh.