Contraception in case of the intake of Orkambi® or the like
My daughter (20 yrs) takes part in a Vertex study, the drug is similar to Orkambi®. For contraception, the pill and all other hormone-based devices, are not suitable. How can she do an effective contraception without being afraid of getting pregnant? The gynecologist has no understanding for her ...
Orkambi® Side Effects
Good evening Do you have information on the side effects of this treatment (Orkambi®) available in France since shortly but already widely distributed in CANADA or the USA? The side effects are severe and there is little feedback to take a decision. Best regards
Vicks VapoRub®
My 3-year-old daughter suffers a little from congestion. She has an antibiotics and budesonide treatment. I wanted to know if products such as Vicks VapoRub® are banned or dangerous, as well as such as syrups, because her nocturnal cough wakes her and I would like to have a relief.
DMSO dimethyl sulfoxide in case of CF
Acoording to Dr. Hartmut Fischer, DMSO is a channel opener and acts against scarring (CF?!). In the laboratory they are working on the chloride channels with DMSO. It keeps the chloride channel open. Does it make sense to use DMSO orally or transdermally in case of CF? Are there any studies ...
Hydrogen peroxide
I have read, that 0.3% hydrogen peroxide could be helpful if used with a nebulizer in case of lung diseases. Furthermore it says that i.v. treatments in case of COPD/emphysema can stop the progress of the illness and partly even improve it. Are there any experiences in connection to CF? I could ...
Mucomyst® [n-acetylcysteine]
Hello, Some CF centers prescribe Mucomyst® (n-acetylcysteine), others not at all. There seems to be a reserve by some doctors about this drug still effective to thin the mucus. I want to know why. Thank you
Substitution of vitamins
Hello dear expert team, at the moment one can read in the press, that vitamin tablets respectively antioxidants could have a damaging effect, especially in cancer patients. I (CF patient, female, 38) ask myself, if I should go on taking my vitamin tablets. Could there be a connection between the ...
More commonly, morphine is used to relieve great suffering. What about for CF people in severe respiratory failure? Can they be treated with morphine if needed? If not, what is the alternative treatment, excluding analgesics?
Hello, Could you, please, talk about the use of Périactine to increase appetite and thus weight. I know that some patients use it but our CF center doesn't seem to know it. I wondered whether studies have been conducted on this medicine or if it's rather used in a isolated way. Thank you very ...
Really always 6% NaCl in children?
Hello, we have a 6-year-old daughter (CF) with a very mild pulmonary course. For about 3 years she inhales 3% NaCl (and 4 drops salbutamol), before this 0,9% NaCl. The center now recommends that our daughter inhales in the future with 6% NaCl (plus 5 drops of salbutamol). Is this reallly ...
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