Topics

Horvi therapy
Can a therapy with Horvi snake poison enzymes positively influence the illness of CF concerning chronic inflammatory parameters, susceptibility for infections and the further course of the illness? Many thanks for your answer!
15.10.2013
Prophylactic therapy in order to avoid esophageal varices in case of portal hypertension?
Dear expert team! First of all I would like to articulate my cordial thanks and respect for everybody of the team! I am very glad, that you have such a great human commitment and answer anonymous patient questions! A short word about me: I suffer from CF, I am 26 years old and have a very good general condition: I do a lot of sports, weigh 82 kg with 180cm height and I cannot be distinguished outwardly from a healthy human being. In the main focus of my CF is my liver: since I can remember I have a liver fibrosis (mainly at the bile ducts) and since 2001 also an enlargement of the spleen. 2012 the diagnosis "beginning liver cirrhosis" was made, that pulled the rug out from under my feet. However, in spite of this, my blood values are without any exception in the normal range (bilirubin: 0.3-0.7, pTPZ 27 sec.), borderline are only however the alkaline phosphatase as well as the number of thrombocytes (about 150 - 160). My CF-center is of the opinion that my blood values are excellent, therefore I am allowed to eat what I like (no alcohol is taken for granted). Now to my concrete matter: As until 2012 I did not engage myself deeply in the progress of my CF, as I was doing always fine, I caught up on this until today very intensively due to the "new" diagnosis of a beginning liver cirrhosis. Thereby questions came up my mind that concern mainly my portal hypertension (thrombosis can be excluded according to the ultrasound finding) and the possible development of esophageal varices. The latter could fortunately be totally excluded in the ultrasound finding from august 2012. However I am afraid, that the portal hypertension increases and collateral circulations are going to appear. As I am a very active person and the wish for doing something is namely in my nature, concerning my liver and its portal hypertension, I would like not only to watch how it is doing collateral damage, but I would like to avoid the development of varices in the esophagus! Is it advisable in my actual, shortly presented course of illness, to lower the portal hypertension with drugs, in order to aviod the development of esophageal varices and other collateral circulations??? Is that possible at all? I would very much like to do everything for this and get prophylactically active. Are there any options and drugs for prohpylaxis of varices via reduction of the portal hypertension that I could propose concretely to my CF-center at my next visit? For your efforts, your human commitment for all of us questioners cordial thanks! Berst regards, M.
15.10.2013
Nasal spray
Hello, I had asked a question to you about the nasal spray sometimes ago, but my question was not good. I wanted to know how long the spray can be open before there is a risk of finding Pseudomonas aeruginosa in the spray. You said “2 months”. Do you think that the spray could not be used after these 2 months because of the microorganism? Thanks for your response.
15.10.2013
medicines (small molecules)
I try to find medicines or research projects for possible medication for class V and VI mutations. For class V mutations, the mRNA splicing does not work properly or the transcription level is too low, as for class VI mutations, there is not enough CFTR channel in the membrane because the increased turnover of the protein from this mutation. It seems I can’t find information whether there has been an attempt to make specific small molecules (mutation-specific medicine). Is that right or didn’t I find it?
14.10.2013
MRSA
Dear expert team, I am 42-year-old CF patient (F 508 / 2789+5G-A), however in very good general condition (FEV1 5.63 L. 98 kg body weight (athletic)). Besides 2 times daily inhalation with sole NaCl solution I do not any further therapies. Once a year, I have a control at the CF-center. Unfortunately, at the last control of the throat swab, multiresitant Staphylococci have been found. The CF-center recommends an eradication trial with fusidic acid and rifampicin or linezolin and rifampicin, as a colonization with this germ can lead to a loss of lung function. I have now 3 times used nasal ointment with mupirocin and mouth wash with octenidin (antibacterial)for a week, the germs however are still detectable. My general practitioner has concerns because of the side effects of rifampicin, I am also of this opinion, especially as I know that my stomach revolts in case of very little amounts of pain killers. What is your opinion, do you share the opinion of the CF-center? For a quick answer I thank you in advance.
14.10.2013
Scuba diving in the swimming pool
Hello. Our 13 year old son would like to dive with bottles in the swimming pool but we don’t know if this activity is consistent with cystic fibrosis. Could you guide us? Thank you.
07.10.2013
TSM (triomethoprim/sulfamethoxazole) resistant Staphylococcus
Does a CF patient's resistant staphylococcus pose a hazard of contagion to a patient with another lung pathology?
07.10.2013
Genetic test
Hello, My boyfriend has cystic fibrosis. We would like to know wether I am or not a carrier of the mutated gene before considering to have a baby. We looked on the internet and apparently I should do a blood test, but where can this test be done?
07.10.2013
Hormonal contraceptives
Hello! I (27, female, CF) use for some years a vaginal ring for contraception. My common medication is levofloxacin, azithromycin orally; tobramycin and meropenem every 6 weeks intravenously; Aztreonam and Colistin inhalatively. In addition, I still take amitriptylin low dosage and further drugs (like vitamins, ursodeoxycholic acid and diverse sprays). I have several questions about this: 1. Until now I have chosen the vaginal ring, as it appeared more safe to me due to its independence from the digestive system with regard to the oral antibiotics intake. Would an oral "pill" be as secure? I meet again and again female CF patients who take the normal (and therefore markedly cheaper) pills. Which one would then be especially advisable? 2. Can the fertility of female CF patients be securely tested? Facing the fact that I could also be infertile, it seems questionalbe to me to take hormones for decades. Until now, I regarded the sole usage of condomes to be too insecure. 3. Is there the possibility of getting a hormonal contraceptive covered by the health insurance, in case a pregnancy has definitely to be avoided due to health reasons? In the next transplantation center I have the status "under supervision", all necessary investigations for being listed have been done, at the moment, however, I am fortunately too fit to be listed. Many thanks in advance!
07.10.2013
Nasal spray
Hello, I would know how many time a nasal spray may be used after the first use. Thanks for your response.
07.10.2013
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