Topics

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
Carrier screening results
I am currently pregnant, and in a blood test screening for 99.8% of CFTR gene mutations, the results state: Summary of Results No pathogenic or potentially pathogenic variants were detected in the CFTR gene. No deletions/duplications were detected. PolyT and TG regions (intron 9): 7T/5T, TG12/TG11. The genotype for the -12T variant in intron 9 is 7T/5T, and for the -34TG variant, it is TG12/TG11. Questions: Based on these results, is there a possibility that the child will have cystic fibrosis at birth? Should the father also be tested?
19.01.2026
nutrition
Dear team, I have a question. I would like to nourish my daughter as healthy as possible. She doesn't like raw food but she eats vegetables not fully cooked. What does better preserve the vitamins: cooking only one portion of vegetables and store the raw vegetables until cooked or cooking all vegetables and keep them cool and rewarm the cooked vegetables the other day? Or is there no difference? (we buy fresh things 2-3 times a week)
25.04.2025
Vitamin K1
Dear team, in former times I got Konakion, this is Vitamin K1. The I was switched to Rainfarn Vitamin combination ADEK. I discovered, that the ADEK vitamins contain Vitamin K2. I heard, that Vitamin K1 is helpful in case of haemotpysis. What is the difference between the two vitamin K preparations?
25.04.2025
Carrier of the CFTR gene, genotype IVSR8-POLYT 7T/7T.
Hello, I am in the 8th week of pregnancy and have undergone cystic fibrosis testing for 75% of mutations. The result was that none of the targeted genetic variants were detected in my CFTR genotype, which was IVS8:7T/7T. However, my midwife called me and told me that, according to the test, I am considered a carrier of this particular gene and that my husband should also be tested for 99% of mutations. My question is: For the baby to be at risk, does my husband need to carry any mutation, or only this specific one? I am very worried because, besides this being an IVF pregnancy, it is also my first pregnancy. I would greatly appreciate your answer.
25.04.2025
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