Topics

Mycobacterium abscessus - therapy with clofazimin?
Dear expert team, In 2010 I have been diagnosed to have beneath Pseudomonas also Mycobacterium abscessus. After long-term i.v. antibiotic therapies the germ was not eliminated. It causes hard problems. Since August 2014 the infections occurred more and more often and in the lung abscesses developed as well as increasing bronchiectasis. My CF center proposes a therapy with cefoxitin (which I do for several month) and now additionally the leprosy drug clofazimin. My question: are there any studies or experience with these drugs? The side effects (discoloration of the skin) are frightening me very much. Furthermore the therapy resembles due to the not enough researched mycobacteria rather a "trial and error". As I want to delay a transplantation due to the high risk of the germ as long as possible, I try to exhaust all therapeutic possibilities. Can you make a recommendation about clofazimin? Many thanks for your answer in advance! Patient female, 33-years-old FEV1 28-40%
06.05.2015
Dental brace/retainer in Cystic Fibrosis
Are braces (that cannot be removed) problematic from a hygienical point of view? Would you prefer a retainer (removable orthodontic appliance)? We as parents would rather prefer braces (that are attached to the teeth and cannot be removed) for our child. Many thanks.
06.05.2015
CF
I am a 15-year-old girl, and have had for 10 years unexplained abdominal complaints and since 4 years I often suffer from anxiety. I have a lot of mucus that I cannot cough up properly. Very occasionally I also lose some blood when I cough too hard. This blood is then mixed with mucus. Afterwards I often have pain in my lungs. Is it possible that I have cystic fibrosis? Or is it not possible?
06.05.2015
Visit water park Neeltjejans
What is your advice in planning a visit with a 6 year old patient with CF to the waterpark Neeltjejans on a blissful summer day? http://www.neeltjejans.nl/waterpark-attracties/
06.05.2015
Auto-vaccine in case of CF
My daughter (36) is a CF patient and we are urgently looking for new/ additional /accompanying therapies. The up-to now done antibiotic therapies do practically have no effect anymore, as multiresistant germs have colonized the lung. Is there the possibility to produce directly/ specifically an auto-vaccine out of these germs? If yes, who can take these germs respectively can isolate them? In the internet I could only find in the laboratories sample taking and production of auto-vaccines out of stool or urine. Which I consider to be too unspecific at the moment in case of my daughter. I ask for advice and support, as the situation is really critical by now.
06.05.2015
CF medical insurance coverage in EU
I will go from Russia to Budapest (Hungary) for working reasons, soon. My wife has CF. Me and her, we will work in Budapest and have a health insurance. How is the needed medical care there? What about drugs (Pulmozyme and Tobi), does it mean it is covered by the health insurance or do we have to pay it ourselves? Which steps do we have to do for the beginning after the movement? Shall we have all results and medical letters translated from Russian to Hungarian?
06.05.2015
DF508 carrier
We proceeded with my husband to check the CFTR gene for CF mutations – 38 mutations, approximately 80% of the mutations. I was found to be a carrier of the DF508 mutation, whereas my husband does not carry any of the looked for mutations. There is a 1/500 chances to have a child with CF. Do you think we should be further tested?
06.05.2015
Sweat test 3 times borderline
Hello, my son, 3-years-old, has had a sweat test for 3 times. Always in the borderline zone. Now a genetic investigation is done. The physician said, however, I should not get upset, this would not have any meaning, yet. Why can these tests be in the borderline zone and there is no illness underlying? Thank you
17.04.2015
Really CF???
Dear expert team, I am 30-years-old and suffer (allegedly) since my 17. birthday from therapy-resistant asthma. I have about two pneumonias every year without all the other infections. Now several times Pseudomonas has been detected and one speaks about a chronic colonization. Now I have been at a university hospital (pneumology) to have a sweat test done. This has been positive two times. What shall I do? The pneumologist at the hospital said, a CF specific therapy would now begin for me. Should I really suffer from CF? What does Pseudomonas mean for my prognosis? I mean I am 30 years old and not a child anymore. Can a CF still be diagnosed at my age? Openly speaking, I am really afraid of the diagnosis. One always hear about CF patients, who are undergoing a lung transplantation and depend on oxygen. Can one suffer from therapy-resistant asthma and CF? Best regards,
17.04.2015
Genotype F508del/1717-1G>A and clinical trial
Hello, First thank you for your site and your answers! Here's what I read in the search results. "Currently, four Phase 3 studies are underway for VX-661 (100 mg once daily) in combination with ivacaftor (150 mg every 12 hours). One of those studies is in people with two copies of the F508del mutation. The other three studies will enroll people with cystic fibrosis who have one copy of the F508del mutation and a second mutation that is either a gating mutation, residual function mutation or a mutation that results in minimal CFTR function". So my question is this: as being compound heterozygous with the mutations delF508 and 1717-1G>A, could I possibly be part of this test? In advance thank you for your reply. Yours
06.04.2015
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