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randdomgirl and welshwitch- I have the same problem with my sinuses. History of 9 sinus surguries that never worked for more than a few weeks. And NO sense of smell left. Havent found any med that worked. However, (and I dont recommend this) since my lungs have taken a downward leap and...

aboveallislove, according to my doc, its my immune system causing most of the issues. Usually I take a chemo drug to suppress my immune system, since it has fun attacking my lungs and causing bronchospasm. (I cant take the chemo and Orkambi) The past couple of years, I've had a heck of a time...

After stopped the orkambi yesterday AM, the reversal has been startling over the past 24 hours. Wheezing and SOB gone, rhinitis gone, slept through night, no nausea, stomach pain GONE. Still have a slightly elevated temp, but its lower than it was, and I suppose it will take my immune system...

Just wanted to let folks know that I have discontinued the Orkambi. I made it 5 weeks. It is not worth it for me personally. These have been the most miserable 5 weeks of my life. The FDA transcript was very educational and helped convince me to stop. Thank you all for your support. I...

From the POV of someone who has experienced nothing but problems from Orkambi, that was some pretty interesting reading. Especially around page 125 and on, where they are talking about a subset of folks whose FEV1 dropped 5-15%. I guess I know what group I'm in.

This is all really interesting. Thanks guys.

saint- good luck!!! I'll be keeping my fingers crossed that you have a totally uneventful starting.....:D Just a note of caution, if you dont have oxygen on hand and/or some powerful meds to stop coughing, I would prep prior to that first dose given your FEV1. At the very least, have another...

Yes, it can happen, not sure how, but it has to me. I scored a 35, 37, 39, 41, and 43 on my blows. For some reason, the tech said that the 41 and 43 were invalid due to something that occurred during the test. Not sure what happened (next time I will ask!). This has happened before. They...

I always get an early flu shot (late august/easry sept) and then a booster mid-winter. Seems to work.

I used to use prunes or prune juice. For me, it worked as well or better than miralax.

Some excellent advice given here. I would second getting him on TOBI asap. Sleep is also imperative for healing. If after he starts the TOBI he still cant sleep, might want to think about a med that can quiet the coughing for 6-8 hours while he sleeps. Then really do lots of PT during the...

Well, still having fevers, (which my doc said is my immune system going at my lungs due to the Orkambi) GI issues, some insomnia, fatigue. Havent noticed any improvement in the lungs and that's a bit discouraging. I was optimistically thinking I was finally getting back to at least baseline...

Hell weeks for me started with the very first dose, within a hour............

Allansarmy, my parents mostly just supported me, which at the time, was more than sufficient. Of course I got the whole birth control/safe sex talk when I was a young teen. I didnt start dating until I was 17 (I was very shy), but then asked a young man out, a guy I really admired for...

Have you had testing for diabetes? (not just an a1c and a random blood sugar #, but complete monitoring over a 24-48 hour period). CF related diabetes plummeted my lung function and gave me all the symptoms of a serious infection for well over a year, but antibiotics never helped, since it was...

I just finished week 3, and I think I am finally back to base-line lung-wise. Still SOB about an hour after I take the Orkambi, but that goes away after an hour or so. Still having some nausea, intermittent diarreah, fatigue, and rhinitis. The fevers are not going as high now, but there are...

Amazing and congrats!!!!!!!!!!!!!!!!!! Is she your first?

Kenna, can you give us some more into? What kind of pills are not getting absorbed? Are you finding chunks of undigested food in your poo as well? Do you take any meds to reduce stomach acid?

Have you tried wrapping your ribs up tightly with a scarf or small blanket when you feel coughing coming on? I found that really helped. Hydrocodone is OK for pain, but great for relaxing the bronchospasms. I keep some on hand at all times in case I get on a "coughing jag". Well, lets hear...

I know there's been a lot of questions about Orkambi and how much fat you should eat with it. Vertex researchers have kindly shared feedback with me that "the data we have with ivacaftor and a controlled diet is with 20g of fat and greater; however, the guidance in the Phase 3 protocols was...