Topics

Compassionate use program for deltaF508 patient
Hello In the press release dated on June 24th, 2014, the Vertex company talked about a "compassionate use program” [comment of the translator: a compassionate use program describes the tolerated usage of a drug that is not licensed for humanitarian reasons] for people who really need a new medicine (I get i.v. antibiotics every 2 months and my FEV1 is actually 30% of the predictive value). Do you have some news? When could this program start? How to get in? I’m not expecting a real improvement but a stabilization of my health. Knowing that submission to the FDA [US Food and Drug Administration] (and EMA [European Medicines agency]?) has the status of fast track designation, when can we expect the agreement of these two regulatory instances? Thank for your reply. A CF patient of 32 years.
06.10.2014
Grommets (tympanic tubes) yes or no?
Hello, Our 4-year-old daughter suffers from CF! She has an impairment of hearing caused by mucus behind the ear (probably due to a precedent otitis media)! At first, we were told to wait and have a control after 3 months, if the finding will not improve: grommets…. Now we have 2 opinions, one physician says, no grommets in case of CF because of bacteria and the other physician says, this would totally be nonsense – if necessary grommets have to be put in. What is your opinion about this? Many thanks.
06.10.2014
Diagnosis of CF?
I am 54 years old. I suffer for about 12 years from the following chronic diseases without a detectable reason: pancreatitis, diarrhea, sinusitis and frequent infections like bronchitis, and atypical pneumonias. Even in case of severe cough I cannot cough it up. Two years ago bronchiectases had been diagnosed. In spite of this, the sweat test was negative. Is it neverthe less possible, that it deals with CF? (I do not drink any alcohol and do not smoke).
06.10.2014
Inhaled salmeterol/fluticasone (Seretide®)
Hello, I would know something about the intention to inhale salmeterol/fluticasone (Seretide 50®) each day, even when the child is not secreting. Thanks very much.
29.09.2014
CT scan of the lungs appropriate?
Hello, many thanks for your help in advance! Age: 36, male, in the frame of a genetic investigation at a center for reproductive medicine a genetic defect has been detected (before history of hypozoospermia, infertility diagnostics in case of CFTR-related disorder). Bronchial asthma, allergic rhinoconjunctivitis, chronic sinusitis, deltaF508 heterozygous, >>> Exon 1-27:genotype: c.(1521_1523del) (;) (3080T>C), furthermore on the protein level: p.(Phe508del) (;) (lle1027Thr), actually normal lung function, exocrine insufficiency excluded, ultrasound of the upper abdomen without pathological findings, vitamin D deficiency, sweat test 1 in the control area with chloride 42, Na 67 mmol/l, second sweat test positive with chloride 61, Na 81 mmol/l. In the department of pneumology (university hospital of Hamburg, Germany) a lung function test has been performed. The result was without pathological finding (98%). Blood values were also without pathological finding. Now a CT scan of the lungs should be done to be on the safe side. My question: is it exaggerated to expose oneself to the radiation if I have no other complaints? Or do you recommend a CT scan in this situation? Many thanks!
29.09.2014
Worsening of the lung function
Hello, My daughter has been diagnosed to suffer from CF 2 years ago (she was already 17 years old). After the first shock, we have begun to accept the disase. The medical care was very good and the therapy worked well. Her lung function increased concerning the FEV1 value from 80 to 107 in February this year and also her overall health state turned again to be just good. Now the lung function decreased since May to 92; no Pseudomonas, only a Staphylococcus could be detected. In spite of antibiotics the value did not increase again. Which reasons might be underlying? She is already taking the second time antibiotics within 4 weeks. Best regards, C.
29.09.2014
Acinetobacter baumannii
Dear ladies and gentlemen, in the throat swab of our 7-year-old son Acinetobacter baumannii has been found. Acutally he receives cotrimoxazole due to an infection. Now we have been told, that we have to be isolated in the CF center and the weekly physiotherapy should take place from now on at home. Additionally, we would not have to take anything else into account. Now my question: next week our son should get gromments (tympanic tubes) on both sides as he has fluid behind the eardrum on both sides and hears 30% less. Is there anything special to consider due to the Acinetobacter baumannii? Is there an increased risk? Furthermore we are registered for a cure...can this be done as planned? Best regards, S.M.
29.09.2014
Nortase®
Is it possible to use Nortase® in case of a known ABPA and CF? If not, are there alternative preparations? The normal pancreatic enzymes are already given in a very high dosage and seem not to be sufficient, omeprazole is already taken for a longer time. Thank you.
29.09.2014
Removal of the gallbladder and digestion of fat
Hello, I have the following question: in case of a CF patient with a high need of pancreatic enzymes (and in spite of this frequent fatty stools) the gallbladder should be removed because of gall stones. Would this in addition even more restrict the digestion of fat (he is already very underweight) or does this play no role? Is there a correlation between need of enzymes (and function of enzymes) and the bile? Many thanks and best regards.
29.09.2014
Tobramycin inhalation
Hello, is there any information if tobramycin inhalation during early pregnancy can be harmful for the baby? We have to inhale tobramycin twice a day with our 2-year-old CF daughter and we ask ourselves if the vapours that we share by sitting next to her could harm the unborn. Many thanks
29.09.2014
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