Have you stopped Orkambi because of side effects?

[Aboveallislove]

In various threads I've seen several refer to discontinuing Orkambi or dropping out of the study. I'm we could try to pull the info all together, with some of the surrounding factors to help CFers access things.

So, if you discontinued or dropped out, could you respond and note:

How long you were on and why you discontinued?

FEV at time of starting?

Antibiotics or meds you are allegic too or unable to tolerate besides Orkambi?

If you have autoimmune or other issues that make meds more challenging?

Thanks in advance!

 

[ethan508]

Along these same lines, I would love if anyone could report before and after FEV% for those who have been on Orkambi for a few months or years (whether you've stayed on the drug or not).

 

[benthyr123]

In various threads I've seen several refer to discontinuing Orkambi or dropping out of the study. I'm we could try to pull the info all together, with some of the surrounding factors to help CFers access things.

So, if you discontinued or dropped out, could you respond and note:

How long you were on and why you discontinued?

FEV at time of starting?

Antibiotics or meds you are allegic too or unable to tolerate besides Orkambi?

If you have autoimmune or other issues that make meds more challenging?

Thanks in advance!

I was in the Traffic/ Transport study. Basically took the real drug for 8 months when it became FDA approved I switched to "Orkambi" in July 2015.
I started the trial with an FEV1 of 48%. I was hospitalized once and took Ceftaz and Tobi.
I noticed an increase in headaches the first day I took the commercial drug. While in the study my headaches were mild, but noticeable several times a week.
I noticed more fatigue, headaches when I switched to the commercial version.
My FEV1 dropped to 38% when I decided to quit Sept 21
I have always done Pulmozyme, Zythromax and Symbacort. I did try Tobi podhaler in March and it lead to my hospitalization. I do not believe Orkambi was the cause of that drop in FEV1
I never did much clearance until I got a Vibralung in Aug (love it by the way)
I decided to stop because it just wasn't giving me much of anything.....headaches have subsided and my FEV1 is back up to 45%

 

[imported_Momto2]

I was on Orkambi for 5 weeks.
My FEV1 at time of starting was 39%.
I have had trouble tolerating some inhaled meds at times due to bronchospasms.
I am also taken chemo meds at times to damp down a very active immune system.

The initial dose almost ended my up in the hospital. My lungs filled with fluid, totally uncontrollable coughing until I took narcotics, needed a ton of oxygen. Then for each dose---
For 5-7 hours after taking each Orkambi pill, my FEV1 would drop to around 25%, sometimes a bit lower.
Then it would creep back up to around 32-34% until I took my next dose.
My blow strength, which was usually around 150, dropped to anywhere from 60-90.
In addition, I have fevers around 102, GI pain, nausea, vomiting, some diarreah, chest pain, obviously severe SOB, insomnia, tons of tight unproductive coughing, a small about of productive cough, night sweats, severe fatigue, headaches, TOTALLY intolerant of any med but TOBI (which was a life-saver).
Around week 2-3, the symptoms did abate a little bit, but I still had no quality of life.

I tolerated this for 5 weeks and then quit with my doctors blessing, and to my family's great relief.
Within about a week my FEV1 was back to normal. But it took me 3 weeks for my body to really recover from the ordeal.

 

[scanboyd]

Great Idea for posting about why you stopped taking Orkambi. I have been approved by my ins. comp. to take Orkambi. Will start the first part of Nov. because I have a couple trips planned and do not want to start this drug while traveling. My current Fev1 is 28% and my FVC is 100%. I will let folks know how Orkambi works out for me.