Topics

Lupus and CF
Dear team, I came across the article “Lupus and CF – Quensyl?” on this platform. I have been diagnosed to suffer from CF and also from Lupus erythematosus. I tolerate Quensyl very well and it has an effect, so that I have to take additionally cortisone only in phases. My question: is it known to you, if the combination of CF and lupus is more frequent or is there even a predisposition? At time the diagnosis had been made in 2011 one could not give me any information about this. Many thanks and best regards!
27.02.2016
Electromyostimulation training (EMS)
Dear ladies and gentlemen, Is it sensible for CF patients to do in addition to an endurance training an electromyostimulation training (EMS)? I got this hint because of my problems with my spinal discs (I suffer from CF, have problems in the cervical and lumbal spine as well as rheuma). Many thanks for your answer!
27.02.2016
Enterobacter chloacae and Serratia marcescenz and S. liquefaciens
Dear expert team, I suffer from CF and I am Pseudomonas negative and have again and again the above mentioned germs in the sputum. Where can one get those bacteria from, they are intestinal germs, aren’t they? The FEV1 value is stable, however I cough more and have difficulties in bringing up the secretions. Inhalations of tobramycin is the current therapeutical regimen of my CF center. Since the occurrence of those germs (about 6 months ago for the first time, then again and again), I feel exhausted and have aching arms and legs. Is the inhalation of tobramycin sufficient and if yes, why can those germs still be detected under the therapy with tobramycin? This seems to be a poof, that there is no efficacy? Many thanks for your efforts!
27.02.2016
3849+10 kb c / 5T
Hello, can you tell me the phenotype of the mutation 3849 + 10 kb c facing the variant T5 please. Thank you in advance. Best regards
27.02.2016
Inflammation
Hi, I'm a CF patient. When my friend comes to stay with me she always spends the night with a very stuffy nose (inflammation without flow) and swollen eyes. This quickly gives the alarm. The rest of the time she has no symptoms (though she lives in Paris ...) Where can this come from (humidity?) And most importantly, can this affect me, too? (Although I do not feel discomfort.) Best regards.
27.02.2016
Mutations F508del & I507del
Hello, We are the proud parents of a beautiful boy with the mutations F508 and I507. We would like to have more information on both mutations together. Our son’s disease looks more digestive than respiratory, although he already had two pseudomonas colonizations (halted by an oral cure and an intravenous cure). What about Kalydeco® or another product on both mutations? Thank you in advance
27.02.2016
Questions about CF
Hello, I live in Morocco and I am the mother of a 10-year-old CF child. I would like to ask some general questions related to its illness: Regarding sputum analysis We had analyzed the same sputum sample in 2 different establishments (private laboratory and a laboratory in a university hospital); the results of the private laboratory are positive (Pseudomonas) while those in the hospital are negative twice. According to the private laboratory, analyzes are done in four Petri dishes containing 4 different culture media: fresh blood, ANC, cooked blood Sabouraud. The seeds that grow former are staphylococci, then the yeast, and finally Pseudomonas which generally can occur after the 4th day and incubation lasts until the 10th day. Regarding the public laboratory, they do not exceed 48 hours since according to them the Pseudomonas is a bacterium that grows rapidly ie within 24 hours that follow their culture and they do not require incubation for 10 days. Can you please give me your opinion on the reliability of each method? Concerning the use of antibiotics 1. In the presence of bronchitis, can the use of the single antibiotic Augmentin (amoxicillin and clavulaic acid) for 15 days can lead to a general improvement despite the presence of Pseudomonas? 2. Can the treatment with the antibiotic Ciprofloxacin orally several times (3 times) contribute to the resistance of Pseudomonas to Ceftazidime? 3. If there is a resistance to Ceftazidime, can then a course of antibiotics (Ceftazidime and Amikacin for 21 days followed by 3 months of colomycin in aerosol) be effective?
27.02.2016
Wellbeing cure for CF
Hello, I would like to know if in France there are specialized treatments for cystic fibrosis just like Thalassotherapy cures. I've heard of a center in Roscoff, Brittany. Can you tell me a little more. Thank you in advance
27.02.2016
CF Treatments
Hi, I'm a CF, I am 15 years old. I am looking for new drugs. I'd like your response. Thank you.
27.02.2016
Orkambi® prescription
Hello My son aged 30, has a F508del mutation but has not been offered ORKAMBI® yet. His FEV1 is 27% and he made all pre-transplant tests a year ago. Are all patients taken into consideration for Orkambi or are there cases where this treatment is not recommended? Has he to request it from the CF Center doctor or just wait the next appointment to propose getting Orkambi®? Thank you in advance for your response Cordially
27.02.2016
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