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Rhizarthrosis_2
Hello, many thanks for your informative answer, which has already helped me. I am in my late forties. An X-ray has been made which says "rhizartrosis left, subluxation in the thumb saddle joint with joint space narrowing. MTP joints inconspicuous." Kind regards
24.08.2012
Bronchitol®(mannitol) and ABPA
Hello! I have CF and would like to get a prescription for Bronchitol®(mannitol) in addition to my other drugs. Currently, however, I am being treated with corticosteroids and antimycotics against ABPA. My question: is there any experience with or contradindication for using mannitol in this case? Could the sugar alcohol actually serve as "food" for the fungus in the lungs? Many thanks!
24.08.2012
Corruption of sweat test results possible?
Hello, Is it possible that the sodium chloride value in a sweat test gets compromised 1. by cortisone and 2. by food (a lot of salt sticks)? After our first test, the value was at 62 mmol/l sodium chloride content. According to the hospital, the threshold is at 60-80 mmol/l. Our son has been inhaling a spray containing cortisone for four weeks. In addition, two weeks ago an ointment containing cortisone was applied.
16.08.2012
Pseudomonas, part 1 & 2
My daughter is four years old and has CF with the n1303k mutation. Despite her bad condition, the diagnosis was made only a year ago. We are at a CF clinic. Two weeks ago we went for a check-up and were told that if a swab showed a germ, I would be notified. I used to call myself, but the nurse was unfriendly on the phone and told me I should not get in touch and that they would call if anything comes up. This time I did not call myself and nobody called me. By chance, because my daughter was unwell on the weekend, I called to ask what to do and also about the swab. The answer, which I did not know about before, was that my daughter has pseudomonas. She was prescribed Ciprobay®(Ciprofloxacin) 5% juice twice a day and Tobi®(Tobramycin) 300 mg twice a day for inhalation. ---- [Editor’s note: another question, “Pseudomonas 2,” was asked shortly afterwards. We are including the text of that question below for reasons of clarity.] My question was: concerning pseudomonas, how can we get rid of it and what do we have to reckon with in case we can not get rid of it? I am looking for a CF clinic and would like to know which one you could recommend. Thanks for your help.
16.08.2012
Rhizarthrosis
Dear expert team, Due to rhizarthrosis on the left and right side with severe pain and limited in movement, I am supposed to present to a hand surgeon. Previous treatments: brace for immobilization, cast for three weeks (Jan 2012), injections (local anaesthetic), pain therapy: Arcoxia®(etoricoxib), ointments. I am an adult CF patient and PSA positive; the last treatment for this was in April 2012. I am taking Zithromax® (Azithromycin) 250mg every two days as long-term therapy, inhaling colistin and Pulmozyme®(DNAse). In case the hand surgeon finds that I should get surgery, I am very unsure whether I should get it done. I am a bit anxious due to the germ colonization with CF. One of your answers on joint pain says: “There are patients who have pain in some phases of their lives and only rarely or not at all later, so that there is a good chance for it to improve.” This, on the other hand, gives me hope, of course. Kind regards
16.08.2012
Grouping MRSA positive patients together in the hospital
Hello, Due to outpatient surgery not related to my CF, I was supposed to be separated from other patients and be prepared in an isolation room of a ward. There was another MRSA patient in that room. According to the nurse, “nothing could happen,” since that patient only had the MRSA in her blood. I vehemently refused to be put into that room and the problem was solved in another way. After consulting my CF clinic, I learned that this approach is indeed common and that hospitals do not distinguish between different strains. Their stance: “MRSA is MRSA.” I disagree and, according to my current state of knowledge, think that MRSA is not at all the same as MRSA. My question now: There can either be transmission, but then even we MRSA patients are putting each other at risk; or there can NOT be transmission, then the whole idea of isolation does not make sense. How can such schizophrenic instructions come about?
14.08.2012
Vertex® agent for 18 patients realistic?
Dear expert team, For some time now, I have been following Vertex® (via their website), who have successfully completed clinical trials for a mutation-based therapy for ca. 4% of CF patients with KalydecoTM. KalydecoTM was now approved in Europe as well on July 27. I am happy for the 1500 European patients. As for me, I am 42 years old, male, FEV1 55%, no Pseudomonas, 177cm, 56kg, no diabetes, no involvement of the liver, and otherwise pretty lively. I now saw in the cftr2.org mutation database that, of 35312 registered patients, just 18 patients have my combination of mutations (dF508:405+1G->A). Is it possible that one of the study agents is targeted at this rare 405+1G->A mutation class and that there is a prospective therapy for me as well? Greetings.
13.08.2012
CF with F508del and G542X mutations
Hello, My son was born in april 2011. He was diagnosed with CF (two mutations G542X and F508del). Are there any progress on treatments that could cure these two mutations? He never had any diseases, it receives his Physio and takes Creon, the ADEK vitamins and does not gain much weight. Yours
13.08.2012
Travelling with oxygen while seriously ill
Dear, I’m a mother of a 22 year old seriously ill CF patient. Our son would like to make a trip with friends to Zakynthos/Greece (8-15 juni). He needs oxygen continuously, at home 5l/hour. What should we do in terms of oxygen supply? In both airports he will land in? Can we take his portabe oxygen concetrator? How many liter/hour can you take on the plane? In the hotel? Which documents do we need? He has limited mobility and needs a wheelchair. We started an application with the health insurance agency.
13.08.2012
Acute/abating pneumonia as counterindication for a sweat test?
The title already indicates my question. For seven months, our 19-month-old daughter has repeatedly been battling a cough that could not be healed completely (Spasmo-Mucosolvan®, Mucosolvan®, salbutamol and Salbubronch®). She has not been coughing much, but actually with only few interruptions since turning one. Now she has been diagnosed with acute pneumonia a few days ago (which is taking up about 1/4 to 1/3 of the right lung). The pneumonia involved a fever of up to 40.5°C over a period of four days. On the fifth day (second day of antibiotics treatment), the fever went down even without antipyretic drugs (ibuprofen, paracetamol). She has eaten very little since, though now her appetite is coming back. On the other hand, she has been drinking a bit more than usual. We have scheduled a sweat test for tomorrow (third day without fever) to check for CF. Is an acute, feverish cold with accompanying diarrhoea a counter-indication for a sweat test? Should we postpone the test for a week or two? Many thanks.
02.08.2012
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