Trikafta Q&A, Experiences, etc.

Ratatosk

Administrator
Staff member
Weird question here but did anyone notice changes in hair? My hair is suddenly super oily lately and I am wondering if it has to do with processing vitamins/nutrients differently on Trikafta now.
I have noticed my teens hair seems more oily at the end of the day, however, his last class of the day is gym, so could just be that and the combination of throwing on a stocking cap to catch the bus
 

ChaosEst1979

New member
Ratatosk,

I did read (after I posted) that a diet high in fat intake can cause oily hair. That makes sense why I would be noticing the difference in my hair now suddenly. I had to switch shampoos and conditioners in addition to washing my hair more frequently.
 

bharison

Member
Yes I have had oily hair since on Trikafta just three weeks. I was on Ivacaftor for 5 years and noticed oily hair then but now it is worse. I have tried several shampoos but nothing seems to work. My hair stylist says to use lemon juice. I tried that but it is too much trouble. It is like I need to wash my hair everyday.
 

Ratatosk

Administrator
Staff member
Noticed my teens nose has had more breakouts, a couple larger blemishes. Areas of his skin that have always been a bit oilier have increased.
 

Mkos1980

New member
Well I finally went for my first appt after starting Dec 4th. Although I feel great, my baseline was 70-72 fev1. Ive always been around this level.since 2005 This time around it was 77. I had hoped higher but I still.feel like this is night and day. I gained 14.5 lbs and I was able to discontinue my antibiotics that ive been on for 30 years straight. Only treatment I will.do now is the pulmazyne at night.
 

windex125

New member
Hi all I am a 65yr old woman with only one functioning lung the right collapsed more than 10yrs ago - I was extremely sick last Sept-Oct coughing 4/5hrs straight - mostly dry hacking -the sputum would come later on o2 #4 24/7 - I started this drug Nov 1,2019 after the first week I was singing R.Kelly I believe I can fly that is how great I felt - of course I hv daily diarrhea usually 3-4x before I can leave the house -that's ok I'm patient - then January a cold horrible always blew clear - but it lasted the whole month - this drug has been a miracle to me my PFT are in the 40's range
 
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