Mycobacterium avium – intolerance of drugs

Question

In my 18-year-old daughter Mycobacterium avium has been found during bronchoscopy in January 2016. Furthermore she has chronic infection with Achromobacter since 2010 and if this was not enough, she has a very high allergic component (IgE 2200).
It is for sure, that in August 2014 no Mycobacteria had been found during bronchoscopy, i.e. she acquired it sometime during 2015. As lung function got worse since summer 2014, one has of course initiated two i.v. courses against Achromobacter (latest 01/16), both did not show any effect on the lung function.
A CT scan 04/16 did not show any caverns or similar pathologies concerning Mycobacteria. And then the nightmare started – in March 2016 she got rifabutin, azithromycin and amikacin for inhalation – rifabutin had to be stopped after 6 weeks due to severe side effects. Then she got levofloxacin + azithromycin + amikacin – levofloxacin had to be stopped after 10 weeks (joint pain knee, ankle, fingers, toes). Xolair (Omalizumab) had a good effect in the beginning, than the effect faded and now extreme loss of hair – that can occur after contacting the producing company.
At the moment, even the CF physicians of the center do not know what to do.
And now my question: is there a guideline about therapy of Mycobacterium avium in case of CF? You will understand, that in spite of all fears concerning this, there is also the fear about a new treatment method.
At the moment one asks oneself – if one does not do anything, the lung will deteriorate – however one will not come through such a long treatment time with drugs that all cause very severe side effects.
I would be very pleased about advice!
ID

Answer

Dear questioner,
We will unfortunately not be able to tell you, how or with which substance you will have to be treated actually. Therefore the online expert team is not suitable. However we try to give you information, that could possibly be helpful for a talk with your physician in order to find then together the best therapeutic option.
The treatment in case of infection with non-tuberculous mycobacteria (NTM) is not easy. Already to distinguish between “only” a colonization or an infection of a patient (independent of CF), is difficult. Making the diagnose does not mean immediately that one has to initiate a treatment, however an individual decision weighing a potential benefit against a potential risk has to be made for the individual patient.
The actual diagnostic criteria and treatment strategies in case of pulmonary infections by NTM are summarized in the statement of the American Thoracic Society (ATS) and Infectious Disease Society of America (IDSA) from the year 2007. Also those guidelines can be found for Germany in the “recommendations on diagnostics and therapy of non-tuberculous mycobacteria of the German central committee for fighting tuberculosis (DZK) and the German society of pneumology and respiratory medicine (DGP).
The therapy of an infection with NTM Mycobacterium avium complex (MAC) is done in Germany according to the statement of the ATS/IDSA. The aim of the treatment is a conversion of the culture (negative sputum cultures). In general the therapy is done until sputum controls are negative for 12 months. In most cases one has to expect a duration of therapy of around 18 months. The therapeutic schemes can be read e.g. in the Journal "Pneumologie" [in German], no 5 from 2015 on pages 287-293 or also on pages 621 under the following link (https://www.thieme-connect.de/products/ejournals/pdf/10.1055/s-0033-1344790.pdf?update=true)
I hope to have helped you with my answer a bit and stay with my best regards,
Yours Dr. med. Christina Smaczny

12.10.2016

11.10.16
Further actual guidelines for therapy and diagnostics of NTM can be read here:
"US Cystic Fibrosis Foundation uad der European Cystic Fibrosis Society Consensus recommendations for the Management of non-tuberculous mycobacteria in individuals with cystic fibrosis" byFloto et al. in Thorax 2016;71:i1-i22
D. d'Alquen