Topics

Orkambi or Symkevi - contraception
Hello, I am thinking about changing from Orkambi, which had a good effect in my case, to Symkevi. In the studies it could be shown that the increasement of the FEV1 lung value is even 1-2% better compared to Orkambi and there should be less side effects. Now my question: can I switch again to hormonal contraception (the pill) if I take Symkevi instead of Orkambi? Many thanks
01.04.2019
W1282X und R347P
Dear expert team, what is the latest research concerning the above mentioned mutations? Will there be any drugs soon that correct the genetic defect? Thanks
01.04.2019
Genetic therapy / coloscopy of the large bowel (organoids)
Dear experts, in facebook, many parents from Russia want to have a test done at the CF Center in Leuven, Belgium (coloscopy of the large bowel) in order to know, whicht gene technique is suitable for their child with CF. How realistic is that? It should not cost anything. Do you have any further information? Many thanks
15.02.2019
Candida auris in the sputum
Dear expert team, if there is Candida auris found in the sputum for the first time, should one react to that? What would you propose concering diagnostic and therapy?
15.02.2019
Stenotrophomonas maltophilia
Dear expert team! this germ can be found in the samples of my son for a longer period of time. Does it make sense to treat? Many thanks
26.10.2018
CFTR correctors
Dear expert team, on the 27th of july 2018the European committee for human drugs has licensed a new drug for delF508 and delF508+residual function mutation. Is this drug also licensed for patients with a residual function mutation or only in combination with delF508? Especially for the rare group of patiens with residual function mutations it is nearly impossible to do an in-vivo study, which seems to be mandatory for the European authorities in order to license the drug. Furthermore the group of the residual function mutations is a rather small group which is not interesting from the marketing standpoint for the companies an therefore it seems improbable that studies or licensing will follow. How do you judge the availability of drugs for residual function mutations in Europe in the near future? Many thanks!
26.10.2018
Symkevi
Dear expert team, what do you think, when will Symkevi be on the market in Germany? I read in some articles that it should be more efficient than Orkambi (2% more increasing of the lung function compared to Orkambi). Also the side effects seem to be markedly less. Furthermore, if the combinations of 3 will enter the market sometime, one would be already on Symkevi (combination of 3 consists of Symkevi and another drug). Do you habe any data? Are the first studies on the combination of 3 finished in January (clinicaltrials.org)? Do you think one should change to Symkevi or go on taking Orkambi (thanks to Orkambi 10-12% more lung funciton) Many thanks,
26.10.2018
Alternative inhalation for Bramitop
Dear expert team, my son (31) inhales Bramitop (Tobramycin) and Colistin on/off. As soon as he changes to Bramitop, he hears himself double, which bothers him. In the time of Colistin inhalation the hearing changes return to normal still. I emphasize the word "still". Are there any alternative inhalations that do not impair the hearing but are as effective or even better than Bramitop? He has Pseudomonas 3 MRGN and the fungus Scedosporium prolificabs. Many thanks
26.10.2018
CF and intolerance of acetylsalicylic acid
Dear ladies and gentlemen, I care for a 17-year-old patient with CF: homozygous for c.358G>A, p.(Ala120Thr), pancreatic sufficient, first diagnosis made at the age of 17; symptoms: nasal polypes for 1 year (polypes were removed 09/17 and 07/18), no pulmonary symptoms, normal lung function, FEV1 101%, CT of the thorax without pathological findings, no MRSA My question: 1. How can the mutation be judged? I was not able to find it under www.cftr2.org. The clinical course favours a mild course, but can one say more about it? 2. Is there any experience about CF and acetylsalicylic acid deactivation? Many thanks
26.10.2018
Germ load of the Baltic sea
Dear expert team, many pulic institutions warn about dangerous germs in the Baltic sea (Vibrio vulnificus). Patients with immunosupression and patients with underlying diseases should not bath in the Baltic sea. Is there a danger for children with CF (not-transplanted) and would you dehort from taking a bath in the Baltic sea? Many thanks for your advice, J. B.
01.10.2018
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