Topics

Lupus and CF – Quensyl®?
Dear expert team, I was diagnosed with an autoimmune disease. However, it is not yet clear whether it is MS (multiple sclerosis) or SLE (systemic lupus erythematosus). My symptoms – persistent joint and muscle pain emerging out of the blue – are probably more in line with lupus, which is why my rheumatologist recommends long-term therapy with Quensyl® (hydroxychloroquine sulfate). I have considerable doubts because of its side effects, especially given that one can probably tell whether there are any positive effects at all only after about six months. Do you have any experience with long-term treatment of an SLE with Quensyl® in CF? If so, could you perhaps give me the name of the clinic so that my doctor or I could talk to the doctor there about the experience? Can you recommend an expert in CF/immunology/rheumatology? Many thanks!
08.05.2012
Playin soccer / particular tips?
Dear expert team, I am 28 years old and was diagnosed with CF at age 7 (delta F508/R347P), with a relatively mild progression so far. I have pseudomonas in my sputum frequently, and aspergillus every once in a while. At the end of last year, I had pancreatitis briefly (probably due to irregular intake of creon), but amylase, lipase, and CRP are normal again. My lung function is pretty good: VC 96%, FEV1 93%, PEF 139%. I am 183cm tall and weigh about 69/70kg. I have always worked out a lot, although I switched from soccer to indoor sports and going to the gym a few years after the diagnosis. I am now considering going back to playing soccer regularly. My questions: 1. Is soccer an advisable sport for people with CF like me? 2. Do you consider it a problem if I play soccer e.g. under wet conditions or in the cold? 3. Do you have any particular tips I should consider? Many thanks and kind regards.
08.05.2012
3121-1G-mutation
Dear Expert, I have a 6 years old boy with 3121-1G->A and N1303K. He is PI (born with meconium ileus), and with regards to the lung disease he is not symptomatic. Can this genetics predict the severity of his lung disease? Can you know the molecular outcome of the 3121-1G->A mutation? Does this splicing mutation result with a nonfunctional protein? Can normal splicing happen in some frequency? Is there a drug in the pipeline for amending splicing defects? And another question with regards to 3121-1G->A, do you know when was the first time that this mutation was linked to Iraqi Jews? Thank you very much!
08.05.2012
Tonsils and adenoids
Dear doctor, Should the tonsils and adenoids be removed in a child with CF? Is there an increased risk of complications or loss of immunity? We would like your opinion on the need to remove or not remove tonsils and adenoids in a child with CF with little nose throat complaints.
08.05.2012
Food and cystic fibrosis
Hello, my baby has cystic fibrosis, I start diversifying food and I wonder about what is best for her knowing that she is a small frame and that one seeks to make her gain as much weight as possible ... rather strong pressure from doctors .... her diet is supplemented at night by enteral nutrition to help growth ... what foods to choose? how much for a 7 month and a half and six kg ? How many meals a day are recommended, should we follow the advice given to other children? What are the specific needs related to her illness? Thank you in advance.
08.05.2012
F508del
I carry the F508del mutation and I would like to know a bit more about this gene abnormality.
08.05.2012
Gain or damage by CT scan
What is the indication to do a CT scan in a 2-year old child with CF? What can we decide from that?
08.05.2012
Bacteria, contagious for a non-CF-patient?
We seem to notice that when grandma has visited our 3-year old daughter with CF that she gets worsening of her COPD or bronchitis. Often to the degree that she needs prednison and antibiotics. Is there a possible connection? Could it be that our daughter carries a virus or bacteria that is contagious for grandma and vice versa? Grandma does not have cystic fibrosis.
08.05.2012
Infection
What does infection with mycoplasma do to a patient with CF and is this easy to treat?
08.05.2012
Alternatives to e-flow
Hello, I am using the E-flow® to inhale hypertonic saline solution. Since the E-flow’s® aerosol generator wears out even when closely following the cleaning instructions (technically, one would need a new aerosol generator every two weeks), I would like to know what is the best alternative – regardless of the price – on the basis of ultrasound. Criteria: Speed and stable long-term efficiency. There is no problem with overdosage through more effective inhalation, since I plan on using the new device only for hypertonic saline solution. PS From a layperson’s perspective, the market is quite limited. I heard that the inhaler used in the context of gene therapy studies in Great Britain is particularly good. Is that true? Kind regards.
08.05.2012
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