Topics

TOBI® (tobramycin) and Ventolin® (salbutamol)
Hello, I have several questions: 1.) When inhaling with tobramycin I notice a strong mucolytic effect. After the inhalation I have a lot of sputum. Much more than after inhaling 6% NaCl or Pulmozyme® (dornase alfa). Is it a side effect of tobramycin that the production of sputum is increased. Is this normal and do you have the same experience? 2.) I am 29 years old. I took salbutamol for a very long time since I was a child. In the last two years I was disadvised to inhale salbutamol because it is bad for my heart. Is salbutamol harmful for the heart if it is taken for a long time? Since a couple of days I am supposed to inhale Onbrez Breezhaler® 150 (indacaterolmaleat) and take at the same time SPIRIVA® (tiotropium) Respimat®. Am I supposed to inhale both at the same time or isn’t this the same drug just from two different pharmaceutical companies? If it is useful and safe, am I supposed to take both in the morning or one in the morning and one in the evening? Many thanks, Ingrid
31.03.2011
NANA
Dear all, My son is 11years old.CF del F 508/525del T. (on exon 4). What is the prognose for this combination of genas? Chloride in sweat is 65.We leave in small country Montenegro on the Balkan and we don't have big medical centar for CF,so your answer will help us a lot...Thank you!
31.03.2011
CA 125 and cystic fibrosis
Hello I wonder if CA 125 is necessarily higher when you have cystic fibrosis, due to the very thick cervical mucus. The rate of my CA 125 is currently 75. Thank you in advance for your reply.
29.03.2011
Mutation
Hello, Is the 1717-1G> A mutation (which is part of class I mutations) associated with premature discontinuation of protein production secondary to a stop codon? In this case, could it be accessible to PTC124 (Ataluren)? Many thanks for your reply. Yours.
29.03.2011
Bronchiectasia and pseudomonas aeruginosa
Hello, I am a 22 years old girl and was diagnosed with CF two years ago. I have a mild form of the disease since pancreas function is more or less okay. The results of the other examinations are also very well. The problem is that I have bronchiectasia and pseudomonas aeruginosa (psa) in the mucus. Before I start explaining the problem I have to say that in Bulgaria there are no CF specialists or CF centers. Most of the doctors have only heard about the disease and have treated only few patients. Two weeks ago I coughed blood once. Then I went to the doctor and the treatment was ciprofloxacin (orally) and amikacin (intra-muscular shot) at home. After three days I started coughing stronger and went to the hospital. The treatment was Fortum® (ceftazidim) and Amikinitraven i.v. for nine days. After that, I have not coughed blood any more. Since four days I am at home and according to the doctor’s recommendation I take levofloxacin. The mucus is still green and thick. Therefore I told my doctor that I have to change from levofloxacin to ciprofloxacin. However, I know that it can cause resistances if the antibiotic is changed frequently. What do you recommend?! And another question: Is bleeding of bronchiectasia dangerous of is it just a symptom of the infection?! Greetings,
29.03.2011
Dairy products and mucus
Hello, Before I had my second child with cystic fibrosis, I have long been treated, and my first daughter, with homeopathy. The various doctors I have consulted in this context have always recommended in cases of rhinitis or bronchitis to temporarily halt the consumption of dairy products that promote the production of mucus in the lungs. If I remember correctly, the production would be stimulated by the liver phospholipid content in milk. I would like to know what role the liver plays in the production of mucus (if played one) and if the consumption of dairy products (or other food for that matter) could have an impact on the quantity and thick mucus in my son. Thank you in advance for these lights.
28.03.2011
Composite CFTR heterozygote
Hello, We are the parents of an 11 years old CF boy. He has 2 different CFTR mutations from class II and I respectively: F508del and 1717-1G>A. If a treatment like the Vx809 is efficient for the F508del mutation, could our child be “cured”? Would it be necessary to add another treatment for the other mutation? In summary: is it necessary to treat the 2 mutations or treating one is enough? Thank you for your answer.
28.03.2011
Shanghai/Mumbai
Dear Sir or Madam, My son has to fly to Shangai and Mumbai for job reasons (each trip takes 8 days). Do you have information if there are contact persons or outpatient clinics for CF? Many thanks in advance.
28.03.2011
Echgenic bowel in fetus
My sister-in-law is pregnant and during an ultrasound testing the fetus was found with echogenic bowel. She got a dna testing and was found to be a carrier of a rare greek CF mutation. My brother went urgently for a dna testing to determine if he is a carrier as well. Does the echogenic bowel mean that the fetus is definately a carrier, or has CF, or both? Could it be perfectly health? Not to have received the mutated gene from the mother? the amniocentesis did not reveal any chromosomic anomalies.
28.03.2011
Mutation F508del
Good evening, I am 38 years old and 6 months pregnant in my second child. After the amniocentesis the fetus was found to carry at one gene (heterozygote) the F508del mutation. Our first child – 5 years old – does not have any symptoms. Is there any danger for the fetus? Thank you, S.D.
28.03.2011
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