Topics

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
Nuvaring® and levofloxacin
Are there any interactions between Nuvaring® (vaginal ring releasing hormons for contraception) and levofloxacin 500? I took it for 7 days. I have started last week on wednesday and stopped yesterday. I have taken the ring our last saturday and will put it in again on the coming saturday. Is this still secure?
07.10.2016
Dyspnea in spite of good values
Hello, I am 28 years old and suffer from CF. At the moment I am mostly doing quite fine, can do sports and the FEV1 is about 70%. In spite of the good FEV1 value I have partly severe problems, if I do not cough up for a longer time. This is true mainly in the mornings, as I do not have to cough during the night fortunately, and it turns worse, when I have slept longer. During the week I seem to get up early enough, however at the weekend I sleep longer and weak up often with extreme dyspnea, so that I partly lay on the sofa for 1-3 hours bending the body forward and try to breathe properly. Salbutamol and ipratropium bromide do not help at all, independently how often I use them; only fluticason plus salmeterol helps a bit, however it takes the 1-3 hours, that are really not agreable, until I feel that it is going better. In the CF center, diverse blood values concerning allergy have been tested without success, in the sputum there was nothing, either, which is normally not common for me. Only the MEF 25 value is with 13% and the residual volume with 230% not so good. The CF center is unfortunately not doing anything against the dyspnea or is trying to find the reason. As I do not know what to do, I increased the dosage of fluticason on my own. This brings a bit of relief, however I do not know if this is a long-term solution. The last possibility would be, that I wake me up at night and do my inhalation, in order not to have dyspnea in the mornings, however by this quality of life is not really increasing. Do you have an idea, where such dyspnea could come from and what could be done about it? Many thanks and best regards,
28.09.2016
Sputum result, additional question
Thank you first of all for answering my question. Unfortunately the second and third part has not been answered. What does it mean if Penecillium sp. could be found in the sputum, however no finding of fungi is documented? Is my body now producing penicillium?
28.09.2016
Side effects of Quinsair® (levofloxacin)
Hello, I (CF patient) have had very unpleasant side effects when using levofloxacin orally. Because of the recommendation of my physician I took it in spite of this for several days, with the result, that the moderate side effects turned to be very strong when taking it again (the foot was massively swollen, beating and hot, strong pain. Another injury is not coming into question). After contacting my CF center, the antibiotic was stopped immediately, the side effects were slowly reversible, walking without pain however, was only after 5 weeks possible. Only after this I read, that the manufacturer had to publish a red-hand letter, due to massive damage of tendons, that are supposed to be caused by the drug. Now the physician is recommending that I should inhale the same substance; at the moment I inhale Colistin (I have MRSA and am free of Pseudomonas), however I do not feel well with the recommended change to the substance (due to the mentioned experience) and I do not trust the statement of the physician that it would not be harmful. In the end she was wrong with that once before. How do you judge the side effects of inhalation compared to oral intake? Can inhalation be recommended without doubts even if the oral intake was causing side effects? Thank you
28.09.2016
Hygiene rules for dogs in rental apartments
Hello, I am a 22-year-old CF patient and I am thinking about having a dog together with my boyfriend after my studies. I know, that I will not always be able to care for it due to my illness. My boyfriend would then take care completely of the dog in such times. However I am worried if hygiene in the household would suffer due to the pet and if this would be a health risk. I read in a paper from the Robert-Koch institute (German official hygiene authority), that one should wash the hands after any contact to animals, even also in case of own pets. I think this is utopian, especially as in the future planned children would not follow these rules. Which guidelines do exist for a CF patient keeping a dog? Is it advisable to let the pet only in certain rooms (which therefore does speak only for a little dog)? In case of choosing a dog breed, it is taken for granted that a dog with short hair is favorable. Is there a great risk to have cross-infections of problematic germs between the dog and the CF patient? Or how great is the risk that my future pet will aquire MRSA or similar germs from the veterinarian office? Many thanks, D.
23.09.2016
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