Topics

Treatment of the sinuses
Dear expert team, I have a question about the treatment of Pseudomonas in the sinuses. Due to an intermittend Pseudomonas infection of the airways, my CF center suspected, that Pseudomonas could also be in the sinuses and should be also treated there, even if the finding of Pseudomonas in the nasal swab and nasal lavage was negative. Now I inhale for the airways colistin and tobramycin one after the other for several months. For the sinuses, colistin has however been prescribed for only 28 days via Pari-Sinus. My CF center is of the opinion, that this duration is sufficient for an eradication of Pseudomonas from the sinuses. What is your opinion? Are there any reports about an eradication of Pseudomonas from the sinuses after only one month of colistin inhalation via Pari-Sinus? Or is a longer sinu-nasal therapy needed, e.g. as long as the duration of the therapy of the lower airways? Many thanks for your answer and your efforts.
07.11.2016
CF in animals
Can animals also suffer from CF or can this disease only occur in humans?
07.11.2016
Drug fever due to i.v. antibiotics
Dear ladies and gentlemen, my daughter (12 years old) got recently an i.v. antibiotic therapy in hospital due to a markedly worsening of her lung function in the last year. In the first week, the therapy seemed to had a good effect. In the course of the second week, however, she got high fever and extreme chills, that occurred in very regluar time intervals and could be suppressed via the intake of ibuprofen. The treating physician suspected a viral infection and wanted to extend the planned antibiotic course for longer than 14 days, in order to prevent a bacterial infection. Via our own research, we got information about the possibility of a reaction to one of the antibiotics with fever and rush (explicitely mentioned for CF patients as a possible side effect in the leaflet). The treating CF physician adhered to the viral in fection, the physician in charge did not know anything about a possible side effect like this, however he saw a high possibility for a connection due to the regluar fever curve and the preparation that was given every 8 hours. The last planned dosage was left out according to our wish and in the course of the next day our daughter was at last free of fever. It was strinking to me, that his possibility was not known on the ward, in spite of the fact that children with CF are frequently treated there and I am very worried, in case my daughter should need such a treatment again. Does such a reaction occur frequently and what shall we do the next time in order not to risk again an allergic reaction? Many thanks
07.11.2016
Sweat test and diagnostic algorithm
Dear expert team, I have read the legal disclaimer and hope my question is possible. I do not want to get a diagnosis of course, however I am looking for further, additional expert opinions. Our son, 6 years old, is at the moment investigated for CF. This was because I had been on rehabilitation due to my own lung disease (LAM, that has nothing to do with CF, other mutation etc.). During rehabilitation I got in contact with CF patients and told the story of my son, who has like me frequently infections of the airways. During the discussion it was speculated if those infections could have something to do with my lung disease and I reported the suspicion of my physicians, that I indeed would also have a so-called slight infection-asthma. In my family there is strong allergic rhinitis (my father and my brother) and my son is also a “cougher”. With that I mean: colds are always starting in the nose, are going down and turn to the bronchi. There the cough is lose however is long-lasting, sometimes for 2-3 weeks. The cough is therefore productive, rarely my son is obstructive and a real bronchitis or even a pneumonia has never occurred. He never got an antibiotic, as it was not necessary. However, my son is sweating easily and is underweight (18,5kg) with a normal height (118cm). He does not eat much, however healthy food, much fruit and salad. He is very sportive and sweats easily, he is however not out of breath. Due tot he talk with my CF friends I contacted the pediatrician, who made an appointment for doing a sweat test in the near children’s hospital. The first chloride value was unfortunately at 50. I have been told, that this could be due to a lack of fluid. My son is not drinking much. The following two days I let him drink quite much (like it was possible) and the second sweat test value was then at 31. Then we had a stool sample investigated. The pancreatic elastase had a super value (I do not have the exact values), fat in the stool was slightly increased. Next step: CF center. Here a genetic testing is done and a third sweat test. I could just wait for the values. However I cannot sleep anymore. After my own diagnosis of a very! seldom lung disease that is life shortening out of total health in February this year, now this nightmare. I often think “if I never started it…” I feel like in a diagnostic mill, a machine that goes on its way. It is good, that one looks so precisely! However it is a borderline value after a borderline value and the genetic test is investigating the most frequent 30 mutations out of 2000. If the test would be negative, which I hope very much, it is going on….according to the diagnostic algorithm. This is bringing me down. My question: how do you judge the situation, is the suspicion really realistic? What else could be the reason for an increased chloride value? What is the genetic testing for that does not test for 1970 other mutations, if it is negative? How long does such a test last? Many thanks in advance and please do excuse that this was quite a long text and that it contains several questions. Best regards, [name of mother was taken away by ECORN-CF]
07.11.2016
New curcuma preparation
Hello, As far as I know, the effect of curcuma on CF is tested in the Netherlands in clinical studies. Now I have read, that a new preparation is going to be put on the market, that should guarantee a high bio-availability of curcuma and therefore should be especially suitable for CF (http://kurkuma24.com/kurkuma-kaufen/kurkuma-mizellen/). Could you please give me a statement on this preparation? Is it worth a try? And if, for which mutation classes it makes sense? With best regards and thank you very much!
12.10.2016
Enterobacteria
Hello, I have still the finding of Enterobacteria (diverse Serratia liquefaciens, then they disappear, then Serratia marescens is appearing or also Enterobacter cloacae) in spite of the fact that I inhale without pause diverse antibiotics (Tobi podhaler, Tobi humid inhalation, Colistin, Colobrathe). My physician refuses oral antibiotics as I am not ill, except a little cough. About 8 years ago, I was in another CF center, and they recommended i.v. antibiotic therapies due to the same finding of germs. The actual CF center does not recommend this – I would do too good for this. However Enterobacteria should not reside in the lung; should they? Are they not pathogenous? They have never been found in the throat swab and in the nasal swab. I do not have Pseudomonas or other bacteria! My question: can I meet other CF patients with these bacteria (according to my center they are not resistant)? My FEV1 value is about 70%. Best regards, K.F. (female) [name shortended by ECORN-CF]
12.10.2016
Pseudomonas aeruginosa
Hello, I'm a mother of a 1 year old CF boy. I wanted to ask how could I know if our child has Pseudomonas aeruginosa outside the swab throat. Are there any warning signs?
12.10.2016
Mycobacterium avium – intolerance of drugs
In my 18-year-old daughter Mycobacterium avium has been found during bronchoscopy in January 2016. Furthermore she has chronic infection with Achromobacter since 2010 and if this was not enough, she has a very high allergic component (IgE 2200). It is for sure, that in August 2014 no Mycobacteria had been found during bronchoscopy, i.e. she acquired it sometime during 2015. As lung function got worse since summer 2014, one has of course initiated two i.v. courses against Achromobacter (latest 01/16), both did not show any effect on the lung function. A CT scan 04/16 did not show any caverns or similar pathologies concerning Mycobacteria. And then the nightmare started – in March 2016 she got rifabutin, azithromycin and amikacin for inhalation – rifabutin had to be stopped after 6 weeks due to severe side effects. Then she got levofloxacin + azithromycin + amikacin – levofloxacin had to be stopped after 10 weeks (joint pain knee, ankle, fingers, toes). Xolair (Omalizumab) had a good effect in the beginning, than the effect faded and now extreme loss of hair – that can occur after contacting the producing company. At the moment, even the CF physicians of the center do not know what to do. And now my question: is there a guideline about therapy of Mycobacterium avium in case of CF? You will understand, that in spite of all fears concerning this, there is also the fear about a new treatment method. At the moment one asks oneself – if one does not do anything, the lung will deteriorate – however one will not come through such a long treatment time with drugs that all cause very severe side effects. I would be very pleased about advice! ID
12.10.2016
Drugs side effects
Dear expert team, I (19y) have a question concerning long-term therapy with antibiotics of the group of fluorchinolones (levofloxacin, ciprofloxacin). Is there any experience with CF patients concerning pain of joints, muscle pain repectively ruptures of the Achilles tendon, that do not heal? In the internet one finds reports about “floxed people” worldwide, who seem to have had really severe damage and that was irreversible. In Germany and Austria those side effects are rather “downplayed” respectively are described to be very seldom. I have had all the time after 3-4 weeks muscle pain respectively pain of the joints (knee, ankle joint), could then however pause again the drug and then the pain went away again. However I have again and again pain in the knee or in other joints, that is however attributed to CF arthropathy. With all the reports, that one reads concerning this topic and as I should now receive a long-term therapy with levofloxacin, that I had to stop due to strong side effects after 12 weeks however, - I ask myself of course, if the pain will go away this time again or if one is really “poisoned”? Therefore I would like to know, if there is special experience in CF and due to fear about the future – what is the alternative? Many thanks in advance, D.I.
07.10.2016
PEG yes or no?
Our daughter, 8 years old, is 121cm tall and weighs 20kg. She has a lung function of 80 - Aspergillus could be detected during bronchoscopy. Since October 2015 she did not gain weight, in spite of the fact that she is eating. We had already nutritional advice. She refuses additional food supplements. Our CF center recommends a PEG (percutaneous endoscopic gastrostomy). What should we do and is it really already necessary? Many thanks for your help.
07.10.2016
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