Topics

Ataluren
When will Ataluren be available in Germany?
02.08.2012
Ataluren
Does Ataluren help with the Delta F508 mutation?
02.08.2012
Azithromycin
Hello, I am 37 years old and have CF. I am currently taking azithromycin again. Are there any long-term studies on the effects of this drug? Improvements in lung function, etc.? Many thanks.
02.08.2012
Delta F508 and Henoch-Schönlein purpura
Does Henoch-Schönlein purpura occur often in the context of CF? My son, who is now 18 years old, does not seem to get rid of it. Also: are there any new drugs for Delta F 508? Many thanks and kind regards.
02.08.2012
Getting pregnant with CF
Dear expert team, I would be interested to learn about the getting pregnant with CF. I am 24 years old and pretty stable. My FEV1 is at 70-89%, and I am 165cm tall and weigh 48kg. I have thyroid hypofunction (2.89). What about fertility? For a “normal woman,” there is a 25% chance of getting pregnant in each cycle. Is that also true for women with CF? Also, the mucous in my lungs is rather viscous and I therefore take acetylcysteine 600mg. Does this also help make the cervical mucous more liquid? Which other possible measures can I take to make it work? I do have a regular cycle, mostly between 28 and 31 days. Kind regards.
02.08.2012
Continued fever with CF
Dear expert team, our 14-year-old son has been running a fever of more than 39 degrees since April. He has P. aeruginosa, mycobacterium abscessus and ABPA. He has a port that was already contaminated with staph epidermids and changed in 2010. Currently, he is taking Tobi® (tobramyin), tazobactam [translator’s note: the original question says “taxobact”], vancomycin i.v., clarithromycin and an antimycotic (not Sempera®) orally. In addition, he is inhaling MucoClear® (NaCl) 6%, Biklin® (amicacin), colistin and Pulmozyme® (DNAse), plus salbutamol and Atrovent® (ipratropium bromide) as dosage aerosols. Do you have any advice as to what else we could do? Kind regards and many thanks.
02.08.2012
Effective mircoorganisms (EM)
Dear expert team, We would like to use effective microorganisms (EM) in our house (e.g. for cleaning). We are wondering whether the bacteria contained in them constitute a risk for individuals with CF. Otherwise, the reports are generally positive. We are looking forward to your answer. Kind regards.
02.08.2012
Diagnostics during pregnancy, and termination
Is there an option of doing diagnostics as early as possible during pregnancy so that a regular termination would be possible, or would/will it always be a late termination? In other words, does one always have to have a stillbirth, or is there any method that will provide a result early enough to have a termination with curettage around the 12th week? This new blood test to diagnose down syndrome early – is there something similar for CF as well? My husband and I are both gene carriers and already have a child with CF.
02.08.2012
Looking for a further spasmolytic I do not know by now
Dear expert team, Before each colistin inhalation (I am resistant to other antibiotics by now), I am using currently the following drugs in a 4-day alternation: Atrovent® (ipratropium bromide) alternating with Berotec N® (formoterol) aerosol and Sultanol® (salbutamol) aerosol. In the mornings Spiriva Respimat® (tiotropiumbromide) two puffs and Oxis® (formoterol) two puffs. My problem is that I can only inhale colistin when the bronchia are extremely wide, since I get massive pulmonary bleeding otherwise (extended aortopulmonary collaterals/MAPCA with many coil embolizations that have been maxed out by now). My question: Is there another short-term effective spasmolytic drug that I could inhale for instance the first two days alternately with Atrovent® (for the third and fourth day) and respectively, on the fifth and sixth day with Berotec N® and Sultanol®? Of course, the new spasmolytic will have to show an effect despite inhalation with Spiriva® and Oxis® in the mornings as well as with the previously used short-term effective spasmolytics (Atrovent®, Berotec N® etc.). The receptors in my lungs get used to the respective spasmolytic agent already on the first day of alternation, so that I have to take more each day. With Atrovent® I am often at 2.2ml (500 µg/2 ml) already after 4 days. After alternating with Berotec® and Sultanol®, I am already at 3 puffs of Berotec® and 2-3 puffs of Sultanol® by the fourth day, with unpleasant side effects, though this is better than getting pulmonary bleeding or inhaling less colistin with shortness of breath and pneumonia as a result. I hope you can help me. I am not looking for a brand name but an active ingredient; my doctor will then tell me about the dosage. Kind regards.
02.08.2012
symptoms of cf
Is it readily identifiable at birth?
01.08.2012
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