Topics

Modulators for R1162X and Q1035X
Good day, Are there any modulators available for the R1162X and Q1035X mutations? Is it to be expected that any will become available in the foreseeable future—or indeed, at any point? Is research still being conducted at all to find treatments for patients with this mutation? Many thanks ...
17.05.2026
Reduction of Kalydeco®
Dear Expert Advisory Team, I would appreciate your opinion on the following matter: based on several sweat tests conducted while I was taking Kaftrio/Kalydeco®—which consistently yielded results between 10 and 18 mmol/L (a very low value)—my CF clinic is now considering whether, in my case, ...
17.05.2026
Blood pressure and headaches while taking Kaftrio®/Kalydeco® (Trikafta®)
Dear ladies and gentlemen, Is it possible for blood pressure to rise uncontrollably while taking Kaftrio® or Alyftrek®, and for severe headaches—such as migraine attacks—to occur? Sincerely,
17.05.2026
Sweattest
Dear CF-experts, I am 29 years old and have cystic fibrosis with the homozygous Delta F508 mutation. Overall, I have a mild course of the disease. Fortunately, I have no lung-related issues, and my FEV1 stands at 112%. My symptoms are predominantly gastrointestinal. Additionally, I have ...
17.05.2026
Chalazion / Hordeolum under therapie with Trikafta®
Hello, my two-year-old daughter has been taking Trikafta® (=Kaftrio/Kalydeco®) since October 2025. Since December, she has been suffering from meibomian gland dysfunction and constantly gets hordeola. She also now has a chalazion that has become encapsulated and isn't healing. Several forums, ...
17.05.2026
Infection frequency / susceptibility to infection
Hello, I am male, 28 years old, and have cystic fibrosis (CF) with the F508d mutation. I am Pseudomonas negative. For about a year now, I have been taking Kaftrio/Trikafta®, which has resulted in some improvements (almost no sputum, improved digestion, and at least some slight weight ...
20.02.2026
Cataract while taking Kaftrio/Trikafta®
Hello, Are there any experiences regarding cataracts in adolescents taking Kaftrio/Trikafta®? Can lenses be replaced in cases of cystic fibrosis, and must the medication be discontinued if cataracts develop? Thank you in advance for your reply. Sincerely,
20.02.2026
Elevated CK (Creatinkinase) in a baby in case of breast-feeding of mother taking Symkevi
My daughter is 7 months old, I breastfeed her and I do not want to stop it now. When she was 5 months old, I started again on modulators (Symkevi/Kalydeco =Tezacaftor/Ivacaftor) because I had a Pseudomonas then and I had been very ill with loss of lung function, etc. My daughter does not have any ...
20.01.2026
Change from Kaftrio/Kalydeco to Alyftrek
Hello, my daughter takes Kaftrio and Kalydeco for some years and is going to take Alyftrek instead soon. Do the blood values have to be controlled in short intervals even if there is a change from one modulator to the other and if yes, which values have to be controlled and how often? Best ...
20.01.2026
Effect of Trikafta
Dear experts, our son is 1 year old and has the mutations del508 and W1218X. We have a question on the effect of modulator therapy. He will get Kaftrio (Trikafta) due to his one del508 mutation. Is there any knowledge about the effect of Kaftrio (Trikafta) in case of this mutation combination? We ...
07.11.2023