Topics

TOBI® (tobramycin) inhalation continuously
Hello, I have question regarding the inhalation of TOBI® (tobramycin). I am 31 years old and have CF. Bacteria are Staphylococcus aureus and sometimes Pseudomonas. Since 3 years I am inhaling tobramycin using the following dosage regimen: 28 days twice a day 300mg, 28 days without tobramycin. During the break my condition is worsening and I also have problems due to an urge to cough after the break when I am beginning again with tobramycin. I read that some patients only inhale tobramycin once a day but continuously. Is that a way to do it? Is this a new trend? The health insurance does not pay me the continuous use of tobramycin (using it twice a day). To use Cayston® (aztreonam-lysine) or Colistin during the break is not a good option because my Staphylococcus aureus is resistent against them. Is it better to inhale tobramycin continuously or using the on/off dosage regimen? Is it necessary to have a "washing-out cycle" after a couple of months? Many thanks
17.04.2012
DeltaF508/R553X, part II
Dear expert team, Please allow me a further question concerning the genotype mentioned in the subject line. In “Ataluren (PTC124) induces cystic fibrosis transmembrane conductance regulator protein expression and activity in children with nonsense mutation cystic fibrosis” (Sermet-Gaudelus I, Boeck KD, Casimir GJ, Vermeulen F, Leal T, Mogenet A, Roussel D, Fritsch J, Hanssens L, Hirawat S, Miller NL, Constantine S, Reha A, Ajayi T, Elfring GL, Miller LL; Am J Respir Crit Care Med. 2010 Nov 15;182(10):1262-72. Epub 2010 Jul 9.), you can find the following graphic summary of the test results: http://171.66.122.149/content/182/10/1262/F3.expansion.html . Do I have to interpret from the results that DeltaF508/R553X has reacted worse to the treatment with Ataluren and that it is therefore not sure whether the drug shows any effects at all with this gene combination? Kind regards.
17.04.2012
Travelling with CF
Dear expert team, We would like to fly to Israel over Easter. Is the air conditioning in low-budget carriers such as Easyjet dangerous for my 11-year-old daughter? Many thanks for the answer.
17.04.2012
cystic fibrosis
Hello, My 13 years old cystic fibrosis daughter has candida albicans fungus. I would like to know the treatment knowing she is under itraconazole for aspergillus. Thank you for your answer.
17.04.2012
ΔF508/R553X
Dear expert team, Could you please help me understand a paper that I found about the above mentioned genotype which is the genotype of my 7-month old daughter. The article "Early Detection of Lung Disease and Its Association with the Nutritional Status, Genetic Background and Life Events in Patients with Cystic Fibrosis" (von Richard Kraemer, Christoph Aebi, Carmen Casaulta Aebischer, Sabina Gallati; Department of Pediatrics, University of Berne, Berne, Switzerland; Respiration 2000;67:477-490 (DOI: 10.1159/000067458)) says the following: "R553X seems to decrease the influence of the ΔF508 deletion in ΔF508/R553X compound heterozygotes, causing a milder course and slower progression." I do not understand how a class-1-mutation (where there is no CFTR synthesis at all according to my understanding) can attenuate a class-2-mutation where "only" the CFTR maturation is malfunctioning? I am a medical lay person but I would like to understand the processes which are influencing the course of the disease. Best regards, KS
17.04.2012
pets
Hello, My little boy is four and has cystic fibrosis. He would like to have a pet. Do you think this is possible? If yes, what are the animals that we can accommodate, and those to avoid? Thank you in advance for your response.
17.04.2012
VX 770
Hello, A CF individual from France told me that the French health authorities do not give approval for VX 770 (not even via the "named patient program" of Vertex) since it is supposed to cause hepatitis side effects. Do you know more about it? [The second part of the question was only relevant for Germany and therefore is not published in the Central Archive.] Many thanks.
22.03.2012
electronic cigarettes
Hello, I have a question about electronic cigarettes (allowed in public places) : what is the content of the "smoke" that they reject? Is it harmful for us, CF patients (since obviously it can happen to us to be exposed in spite of ourselves)? I read that most were made ​​in China and that the nature of their smoke could be very variable. Thank you, kindly.
22.03.2012
Combination of two mutations
Dear expert team, I am a carrier of the F508del mutation, my husband is a carrier of the 5-T variant in the CFTR gene. My brother has CF. Our son was born two-and-a-half years ago in the 36th week. Apart from being very small and lightweight due to premature birth, he does not show any signs of CF. We have therefore been advised against diagnostics so far, and we were also told that a manifest CF would be very unlikely for our son with this combination of mutations, and that my husband’s mutation is a very mild one. Now my question: Is CF really unlikely for our son with our combination of mutations? And what does “mild mutation” mean for my husband? Many thanks for your advice.
22.03.2012
c.3773_3774insT (p.Leu1258PhefsX7)
Our son has the above mentioned mutation as well as Delta F508. The latter is known to me but for the one that is mentioned in the subject line I could not find any information. Considering these mutations, what can we expect (concerning the course of the disease and the medication)?
22.03.2012
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