Topics

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
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
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
EMS training, increased CK value and other side effects
Dear expert team, due to back ache, I think about beginning an EMS-Training (=electro-myo-stimuation). I am female, 50 years old, suffer from CF, my FEV1 value is 65% and I take Kaftrio. During the physiotherapist was taking my story (I told freely all details of my illness), she got more and ...
18.07.2022
Inhalation of Biklin® (amikacin)
Dear expert team, as I have mycobacterium abscessus in my lungs, my CF center has recommended to inhale 1-2- times daily amikacin for 3 months. Do you know, if amikacin can be inhaled with the e-flow? I have some other questions: At the beginng of 2016 I had problems to see and strong vertigo, ...
05.03.2018
High blood pressure (associated to the intake of the pill?)
My daughter is 26 years old, has CF and persistently high blood pressure, it does not matter which drugs she takes because of CF. She is doing anti-conception with the pill. Can the pill be resposible in CF for causing other symptoms compared to a healthy women, e.g. high blood pressure? Many ...
17.07.2017
Kalydeco and enzymes
Hello, my daughter gets Kalydeco for 16 months now. Now it came out more and more, that she gets constipation and stomach ache with the normal dosage of enzymes. We have markedly reduced the enzymes then. Unfortunately, this was not successful either. Then we did not give any enzymes at all ...
12.06.2017
Lung produces since recently extremely much mucus, why?
Dear expert team, my brother, my sister and me, we suffer from CF. Unfortunately the condition of my brother worsened extremely in the last 4 weeks. The reason is until now not really clear. He got 5 weeks ago ORKAMBI as a new drug. Unfortunately it seems that at the same time a pneumonia came ...
12.06.2017
Pregnancy and aerosol
Hello, Mum of a 20-month-old CF baby, I just learned about my new pregnancy. While waiting for a prenatal test to know if the child is affected, can I continue to administer tobramycin and colistin aerosols (and pulmozyme in the morning) alternately twice a day. Knowing that during aerosol ...
13.04.2017
Pregnancy, Patiente and aerosoltherapy
Hello, I suffer from CF and in the second months of pregnancy. Can I continune my aerosol therapy with rhDNAse (Pulmozyme), colistin and tobramycin? What about the oral antibiotics (azithromycin etc)? Or what about potentailly necessary i.v. therapies? Is this without danger for my baby? Many ...
13.04.2017
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