Topics

EMS training, increased CK value and other side effects
Dear expert team, due to back ache, I think about beginning an EMS-Training (=electro-myo-stimuation). I am female, 50 years old, suffer from CF, my FEV1 value is 65% and I take Kaftrio. During the physiotherapist was taking my story (I told freely all details of my illness), she got more and ...
18.07.2022
Inhalation of Biklin® (amikacin)
Dear expert team, as I have mycobacterium abscessus in my lungs, my CF center has recommended to inhale 1-2- times daily amikacin for 3 months. Do you know, if amikacin can be inhaled with the e-flow? I have some other questions: At the beginng of 2016 I had problems to see and strong vertigo, ...
05.03.2018
High blood pressure (associated to the intake of the pill?)
My daughter is 26 years old, has CF and persistently high blood pressure, it does not matter which drugs she takes because of CF. She is doing anti-conception with the pill. Can the pill be resposible in CF for causing other symptoms compared to a healthy women, e.g. high blood pressure? Many ...
17.07.2017
Kalydeco and enzymes
Hello, my daughter gets Kalydeco for 16 months now. Now it came out more and more, that she gets constipation and stomach ache with the normal dosage of enzymes. We have markedly reduced the enzymes then. Unfortunately, this was not successful either. Then we did not give any enzymes at all ...
12.06.2017
Lung produces since recently extremely much mucus, why?
Dear expert team, my brother, my sister and me, we suffer from CF. Unfortunately the condition of my brother worsened extremely in the last 4 weeks. The reason is until now not really clear. He got 5 weeks ago ORKAMBI as a new drug. Unfortunately it seems that at the same time a pneumonia came ...
12.06.2017
Pregnancy and aerosol
Hello, Mum of a 20-month-old CF baby, I just learned about my new pregnancy. While waiting for a prenatal test to know if the child is affected, can I continue to administer tobramycin and colistin aerosols (and pulmozyme in the morning) alternately twice a day. Knowing that during aerosol ...
13.04.2017
Pregnancy, Patiente and aerosoltherapy
Hello, I suffer from CF and in the second months of pregnancy. Can I continune my aerosol therapy with rhDNAse (Pulmozyme), colistin and tobramycin? What about the oral antibiotics (azithromycin etc)? Or what about potentailly necessary i.v. therapies? Is this without danger for my baby? Many ...
13.04.2017
Breathlessness during intravenous treatment
Hello As soon as I am on an intravenous antibiotic treatment iwth Ceftazidim and Cotrimoxazole orally, I am very breathless while without treatment I am not. Do you know if it's because of antibiotics? Thank you
17.03.2017
Thrush
Hello, What can we do to prevent our 2 year old from getting thrush (candida fungus)? She has it regularly, especially after the antibiotic cures. It spoils life because she refuses to eat and it is very painful. Thank you for your help.
24.02.2017
Tobramycin
Are there any adverse effects with inhalative Tobramycin? If yes, what are they? Thank you for your help
30.01.2017
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