Topics

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 gain). However, my concern is my susceptibility to infections, which is causing me great worry: Starting with a COVID infection in November 2024, I had about 8-9 colds/flu-like infections last year (2025). In previous years, it was usually about 3-4 infections per year. These usually involved a sore throat, runny nose, headache, sometimes a cough, and lasted for 1-2 weeks. It's not just the sheer number of infections that's concerning, but also the fact that they now follow a fairly regular pattern: After recovering from an infection, it takes about 5-8 weeks for the next one to occur. I actually pay close attention to a healthy diet and exercise, but last year I was only able to do a minimal amount of the latter due to my condition. My comprehensive blood tests have always been normal/unremarkable. I have no vitamin deficiencies, and my white blood cell count and response to infections are normal. My antibody levels have also been normal. After starting Kaftrio/Trikafta®, the course of the infection has sometimes changed: With three infections, I initially had typical cold symptoms for 4-7 days, before developing a fever of up to about 40 degrees Celsius for 1-3 days, accompanied by a chesty cough. Before Kaftrio/Trikafta®, for example, I would get a fever immediately on the first day of illness with COVID or influenza, whereas with regular colds, I almost never had a fever in the past. My primary care physicians and the CF clinic see no need to investigate this further, as my blood work is unremarkable, and they say things like, "Many people get sick, some just get sick more often," or "you'll be fine again afterward." Therefore, I have a few questions, as I find this quite worrying and not normal: Do you have any ideas what the cause of such susceptibility to infection might be? What tests would you recommend? Could the start of Kaftrio therapy be related to this, or is it just a coincidence and there's no further connection? I would be very grateful for your assessment and feedback.
20.02.2026
Is ectoine good for recurring bronchitis?
Is inhaling NaCl 3% with ectoine (Pari Mucoclear 3% Protect ®) effective against recurring bronchitis?
01.02.2026
ADEK as a ready-made product, individual prescription or individually from the drugstore?
Does it still correspond to the medical consensus in Germany that cystic fibrosis patients (including those undergoing ETI-CFTR modulator therapy) should receive individually prescribed ADEK vitamin preparations from the pharmacy and have their vitamin levels checked annually – or are commercially available single preparations (e.g., from drugstores) now considered an equivalent alternative by doctors?
01.02.2026
S1235R mutation
Good evening, I am currently in the 13th week of pregnancy, and during the cystic fibrosis screening, the variant c.3705T>G (p.Ser1235Arg, rs34911792) of the CFTR gene (NM_000492.4) was found in heterozygosity. According to the CFTR2 genotype-phenotype correlation database, this variant is classified as non-pathogenic with regard to the development of cystic fibrosis (non CF-causing). The doctor recommended that my partner should also be tested. What are the chances that our baby will have cystic fibrosis?
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 regards
20.01.2026
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 symptoms, but when she had a control of blood values, the CK-value was increased (544). At the first control of blood values in July the CK-value had been 400 and the GOT (ASAT) value was also increased. It is now at 79, therefore borderline. My CF-Center has no information that the CK-value could be elevated due to modulators, the pediatrician has no experience in CF and is of the opinion, this could be due to the the muscle strain as she is learning to sit. Do you have any experience with modulators and increased CK-values?
20.01.2026
Carrier for CF
Hello, I (male) have the desire to have children and therefore an azoospermia was diagnosed. Then the genetic test showed I am a carrier for CF that is obviously the reason for this. In the summer, I have the impression, the heart beats very fast during sport, stress or alcohol exposition. Could this be due to a lack of salt on the blood? Is it recommenden for carriers to increase their salt intake? I will have an appointment for doing a sweat test at the university hospital soon. Thank you
20.01.2026
Inquilinus
Hello, I am 27 years old, CF patient (F508 homozygous). Until today I have only been colonized chronically by Staphylococcus aureus (Pseudomonas was always negative). My FEV1 value is between 107-117%. For several weeks I have been taking Kaftrio now (Trikafta). This led to a broad improvement: I have no cough and no sputum anymore. Two weeks ago I had an infection, the course seemed to be not the usual one to me. At first, I had only slight symptoms of a cold, then 3-4 days later I got heavy dark green sputum (which I was not used to have anymore since Kaftrio), as well as I got fever over 39°C. After the intake of a fever-suppressing drug, the fever went down to a moderate temperature and it went away in the course of the next day. The blood showed increased inflammatory values, e.g. the leucocytes were increased and the CRP value. In spite of the down-going fever I got 2 antibiotics (amoxicillin/clavulanic acid 3 times a day for 7 days and clarithromycin 500mg two times a day for 5 days). In the meantime I have no symptoms of a cold anymore, however I still have some amount of slight greenish sputum (I did not have this before this cold). My CRP value got back to normal. In the acute phase of the infection my sputum was tested. Now I have the result; besides the chronic colonization with Staphylcoccus aureus a new germ has been found: Inquilinus. This germ seems to be relatively rare, I found on this site an old remark about this germ, which was written in 2013. Therefore I would like to ask if there are any new findings. I read about a worsening of the pulmonary function due to this germ. Now my question: how do you judge the danger of this germ concerning a worsening of the lung function and would you say it should be treated? If yes, how urgent is the beginning of a treatment and it there any hope of success due to the multiresistancy of the germ? Best regards,
20.01.2026
Nosokomial germs
I would like to know whether patients with long-term diagnosed MRSA and 4-MRGN infections are still considered high-risk patients if no MRSA or 4MRGN has been detected over a period of 18 months with multiple examinations conducted during this time? Provided that the clinic does not downgrade the patient for safety reasons, the question would be whether the patient can again participate in public events of the Cystic Fibrosis Association. Are there guidelines, recommendations for action, or similar advice regarding this?
19.01.2026
Pulmozyme
Hello, Our son (6 years old, no modulators) is supposed to start Dornase Alpha. We would like to ask about your experience with its effectiveness? Furthermore, despite a balanced intake of Kreon (pancreatic enzymes), he has a high calprotectin level (980). Do you have any suggestions regarding this? Thank you very much for your reply.
19.01.2026
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