Topics

Meveol®
Dear expert team, I read something about the development of Meveol®. It seems to be very promising to me. Is there anything new at the moment about this topic? Can one make a prognosis, when the drug will be on the market? Many thanks in advance.
16.07.2016
ABPA and horse riding
Dear expert team, I am 29 years old and suffer from CF with a quite stable FEV1 value of 65%. In the last years, there was two times the suspicion of ABPA, as I had dyspnea, but no antibiotic helped. The blood values were never really clear, but since then I take 5mg cortisone daily, have Aspergillus in the sputum in spite of this but no special problems with ABPA anymore. Already since childhood, I have the great wish to learn horse riding and would now like to really learn it. Do you consider this to be too dangerous regarding the ABPA? If yes, is it possible under certain constraints (e.g. not to clean the stable)? I have even looked for a stable, where one can enter each horse box from the outside and where one does not need to pass the narrow stable ways, so that I would be as much as possible outdoors. What else do I have to pay attention to? If I should realize that I suffer from dyspnea in connection to horses, I would of course stop it immediately. Could I then expect, that after a possible cortisone therapy everything returns to be as before or is there a great chance that irreversible damage occurs? Many thanks in advance,
16.07.2016
Endoscopy of the gut
Hello, Today I had an endoscopy of the gut. This was done, after I had lost uncontrolled greater amounts of stool in short time intervals. I am a 54-year-old CF patient in a relatively good health condition with an FEV1 of 50-65% (this varies according to the season) and I suffer i.a. from seizures (once a grand-mal seizure). My question concerns the endoscopy of the gut, as it was done under propofol. During the investigation I was “wakened”, because I had a strong cough and therefore they were not able to operate the 1.5 cm large pediculated tumor in the terminal ileum. However, biopsies were taken. Furthermore it reads…”during the investigation there was a marked prolapse of the rectum about 10cm, triggered by the cough.” I still felt not well after the investigation due to the still bothering cough. On my question, how it could happen like this, the doctor said, it might most probable be due to my illness of CF. I now searched the internet and found that propofol has a frequent side effect cough and seizures. Why do I have to fill in 4 pages of history, if nobody reacts to it…one could have given me cough suppressant (codein) or is this forbidden during such a procedure? Now I have come through the torture, however the polypi are still there and should be removed together with the rectopexy in general anaesthesia. An operation with our diagnosis and also in my age is always accompanied with special risks…I am afraid of this. What do you recommend, another endoscopy? With another drug, in order to remove the polypi? And what is concerning the prolapse, there are alternatives, one could try bio-feedback training. Much information and also a bit confused…however I hope, that I get advice never the less, how I could proceed the best. Many thanks
16.07.2016
Blood in the sputum
Dear expert team, Pseudomonas aeruginosa has been found in my sputum. Already a few months ago, I did inhalations with Colistin (2 x 1 Mio). I tolerated the inhalations well. The health condition improved. As Pseudomonas has soon been found again, we decided to do a 3 months eradication therapy with an increased dosage of Colistin (2x2 Mio) and additionally Ciprofloxacin (2 x 750). The therapy has been tolerated well for 4 weeks (apart from the amount of mucus increased markedly,it is turning however more and more lighter). After 4 weeks of therapy, blood in the sputum occurred. On the first day it was quite much (a few ml). After this, Ciprofloxacin had been stopped, as coughing blood is listed in the leaflet as a possible side effect. Colstin was intermittendly reduced to 2 x 1 Mio dosage. I continue the therapy like this for further 6 days (thus only Colistin 2 x 1 Mio). At the daily coughing-up however, still blood is coming, in the form of several little blood streaks. I read in the literature, that coughing blood can also be a side effect of Colistin inhalation. On the question, if one could go on inhaling Colistin, it is written: “benefit and risk have to be weighed against thoroughly.” Now I would like to weigh up damage/risk and benefit. The side of the benefit is clear: it is the hope to eradicate PA. For this reason my treating physician is of the opinion, that I should continue the therapy. On the question, which damage I may cause due to ongoing inhalations of Colistin in spite of hemoptysis, he could unfortunately not make a comment. My questions concern the topic damage/risk. Which risk do I have if I would go on inhaling Colistin in spite of hemoptysis? I imagine it to be like this, that the mucosa is very irritated by the Colistin and therefore turn out to be thinner or more inflamed, so that it is bleeding now. Is there the risk, that by further inhalations the damage of the mucosa is getting so hard, that this damage stays irreversibly in the mucosa? Or that the ciliae will be damaged irreversibly at the places of bleeding? Or can one assume, that no irreversible damage is staying in the mucosa as soon as inhalations are finished? According to the opinion of my doctor, a short term interruption of therapy would risk the success of the eradication therapy: due to one moth of the intensive therapy the number of germs was markedly reduced. Due to a pause, the resting PA could start again multiplying massively. Therefore I could in the worst case come back to “point zero” of therapy. Many thanks for your answer, Best regards, L.A.
04.07.2016
Insulin
Hello, We are parents of a CF 5-year-old child. We were asked to "think" and "give an answer" to a proposal of the CF doctor: prescribe our child "a small dose of insulin daily, free blood glucose measurement, preventive." We fail to understand this question, because we are not doctors... Thank you in advance for your response that we "enlighten" and that will help us answer this question.
04.07.2016
Mosquitoes
Hello, Following recent floods, including Ile De France, the mosquito population will increase. What are the risks for CF people, especially babies? Cordially.
04.07.2016
Mycobacterium intracellulare in the CF sputum
Hello dear expert team, in my sputum (I am nearly 30 years old) Mycobactrium intracellulare has been detected last December for the first time. Since then this bacterium could be found in 2 further tests, so that I can assume a chronic infection. As I have been at another CF Center before and to my knowledge those mycobacterial investigations have never been done there, I assume, that I have this bacterium already for a longer time. As I am doing very well (FEV1 is at the moment between 84-88% and is unchanged) and as I can do a lot of sports without problems (mountain sport: ski tours, climbing, running, mountain biking…) and I have no complaints, I ask me and you the question, if I should have the Mycobacterium treated at all? The treatment would last for months respectively years and would bring side effects with it. Wouldn’t it be like this that after at least 4 or 5 months an infection with this bacterium would have lead to a deterioration of the lung function respectively other symptoms would have occurred? I would be very pleased about an answer. Best regards, A female CF patient
04.07.2016
Mutations F508del and R553X
Dear expert team, Our son has been diagnosed to suffer from CF at the beginning of January at the age of 9 weeks, after we had been admitted to hospital with a hemoglobin value of 6. The little boy became 2 blood transfusions and takes zinc tablets since then, as he also had a zinc deficiency. The poor gain of weight (only 3500 grams at the age of 8 weeks with a birth weight of 2900 grams) has not been taken for serious from the pediatricians. The sweat test value was 90 and had been confirmed with 84. We have been discharged with Kreon, zinc tablets, double dosage of D3 and the wish to visit once a week a physiotherapist. At a further appointment, genetic testing had been done. The mutations F508del and R553X came out. Now my question about this. You answered in 2012, that with that combination the involvement of the lung until about the 12th year of life would be less compared to the homozygous form with F508del. Is this still correct? Our CF center mentioned the drug Ataluren to be at the horizon. Do you really think that it will still be licensed after so many years for the usage in case of CF? One can read in the Internet, that in case of 2 different mutations, always the milder one determines the picture of the illness. Is this correct? If yes, Ataluren would not help us further. Before easter he had again been in hospital with an alkalosis. We have been told that this would mostly be due to the infection, as our son had vomited markedly some days before. As this had been 1-3 times a day and he had directly been breast fed afterwards, in order to compensate the loss, we can only hardly imagine this. What is your opinion about this? We have only been advised to start with feeding purree once a day and to add a bit of salt. Additionally, our son had strong cough and rhinitis. Due to the cough and the fear to get a pneumonia we had only gone to the hospital. During this stay in hospital, the next visit in the CF center was planned to be. After we questioned it, we got yesterday now our inhalation device. We ask ourselves by now, if we are well cared for in this center. One reads about other patients, that they start inhalation directly and should do daily physiotherapy at home. A recommendation for inhalation has not yet been made concretely. How is this done in your center? Many thanks in advance for your help, Yours sincerely, Mit freundlichen Grüßen, V.S. mother oft he child
24.06.2016
Neglect of therapy by one parent
Dear expert team, I have the problem, that my former partner and father of my children neglects strongly the CF therapy and hygiene rules and my CF son has frequently infections after having visited his father. The actual infection (after 2 visits of a swimming pool with strong undercooling) is endangering a planned operation and a rehabilitation afterwards. Direct communication is not functioning. To the question, what has happened, the answer followed.:“the fever would be psychological”. In former days, the father (engineer) cared a lot for his son and took therapy for serious. That means one could assume, that he is involved in the topic, as we have the last 3 years managed it together. In the meantime, he is taking it not for serious, partly does not give Kreon….I just do not know anymore what to do, because for me, it is turning more and more in endangering the health of the child, however I do not want to risk the father-son relationship. What could I do, who could I involve, in order to sensitize him for the topic? I would be pleased about a recommendation from your side. Best regards,
24.06.2016
GLPG1837 Galapagos clinical trial
Hello A clinical trial with the CFTR protein potentiator GLPG1837 (Galapagos) has just started. Obviously this molecule is for patients carrying a class III mutation. Is the clinical trial ongoing in France? When will results be available? If compared to Kalydeco® could this new molecule present additional interest? Thank you for our reply
20.06.2016
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