Topics

Compassionate use - VX809
Hello, I turn to you with a question concerning VX-809. Vertex reported at the presentation of data (Phase 3 Ivacaftor / Lumacaftor from June 24th, 2014) 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]. These do indeed start, when the request for licensing is sent to the FDA or EMA. This should be done in a timely manner (3/4 of this year). Do you have any more precise information about this? How can one take part in such a program? To whom should one address to? In my center they say, that we as patients will get the drug after market authorization. To myself: female, 28, vems 35% (after i.v. every 3 months).
13.10.2014
Can the diagnose change?
Hello, in the year 2008, two sweat tests of my at that time 5-year-old daughter were 59 and 78. After this, there were two further sweat tests at a university hospital with the values 26 and 12. The measurement of the elastase in the stool was 638 and 629 as double measurement. Therefore the result was "negative" concerning the illness CF. Actually she is ill for already 4 weeks and the antibiotic, the mucolytic and inhaling do not bring any relief. Now my question: can the diagnosis "CF" be positive now?
13.10.2014
Detection of fungi in the throat swab
Dear expert team, our daughter suffers from CF and is now nearly 5 years old. She is doing well and the doctors are very content. The last throat swab detected now Aspergillus and Candida. Looking in the past, she has otherwise mostly Staph. aureus in the swab. As she is doing well, we do not have to do anything concerning this result. What would you recommend? Should we, if necessary, nevertheless start a therapy? Where could she have the germ from? What effect do the fungi have? Many thanks for your answer.
13.10.2014
Autodrainage
Hello, I have a 17 year-old CF child and her pneumologist warns us about her lack of independance for chest physiotherapy at her age. What age do you recommend to learn to do chest physiotherapy alone to be more independent during holidays and as a support to daily sessions? Thank you
13.10.2014
Lactrase® preparation in case of mould fungus allergy and CF
Hello. I am suffering from CF and lately, a lactose intolerance has been diagnosed. As I am additionally allergic to mould fungi I would like to know, if I can take uncritically Lactrase® preparations, as they are mostly breeded on mould fungi? Many thanks for your efforts, Best regards,
13.10.2014
Inhalation with 3% NaCl solution
Dear expert team, at first, many thanks for your always quick and competent answers!! My daughter (23 moths, CF) has been prescribed Mucoclear® (3% NaCl) for inhalation. Before, she inhaled always with 0,9% NaCl and Berodualin® (fenoterol and ipratropiumbromide, both bronchial widening substances). At first, I did "mixtures" and after a few weeks I took only 3% (also with Berodualin®). From one moment to another, she got sleeping problems since she started the sole 3% solution (during the day, she could nearly not sleep at all, besides fatigue) and she had instead of 1-2 times stool per day 3-4 times stool per day, and that was partly massy. Other things, like getting teeth, getting to cold i.a. can be excluded. Reportedly such side effects are not the custom concerning Mucoclear®. Can it be, that she reacts simply different to it than others do (like it is in general often the case with drugs)? We stopped it after about a week and now everything is normal again. Many thanks for your answer, Best regards, G.M.
13.10.2014
No effect?
Hello, I suffer from CF and take for one week Bronchitol®. However, I do not have the impression at all, that it transports my mucus. During inhalation I cough severly, however it does not come really anything out, it is more a dry cough. I am now a bit insecure, I cough now more than before (the whole night), however nothing is getting loose.... I hardly cough in general, now I do it constantly and nothing happens, it is only an irritating cough. Does it take some time until it has an effect? I have up to now read so many positive reports from other patients, that I ask myself the question, if it is effective at all in my case!
13.10.2014
Irritating cough
Hello, since a short period of time I have a strong irritating cough, so that I can hardly breathe in between! I inhale Bronchitol® as well as Tobi®! Probably one can help me further! Many thanks in advance, S.
13.10.2014
Acne in case of CF
Dear expert team, are there any other possibilities to treat an acne conglobata of a CF patient? Isotretinoin and antibiotics have unfortunately not brought an improvement of the skin picture. Many thanks in advance and best regards,
13.10.2014
Removal of the gallbladder
Hello, can the need for enzymes (Kreon, Panzytrat etc) increase after removal of the gallbladder? Yours sincerely, A. K.
13.10.2014
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