tobi

Question

hello
I have CF and am 28 years of age
over the last two years my FEV1 has declined from 68 to 48 % predicted because I worked in an environment with heavy smoking, this is irritating my lungs and I did 6 hours physiotherapy per day, I receive one course of iv antibiotics per year and sometimes I also take oral ciprofloxacine
now after the iv course my FEV is 58 % predicted, but I have problems to organize my physiotherapy and my inhalations, now I have received a new treatment but my lungs are more inflammatory than infected, in my blood test I have a CRP of 15 and I have received inhaled fluticasone and TOBI, I have already taken it 3 times but I feel unwell taking it, I have the impression that 5 ml is too much and feel like drowning, on top of it I should do pulmozyme (DNAse), mucoclear (hypertonic saline) and ventolin (salbutamol), since I started the TOBI I feel nauseated, have headaches, my nose is running and my sputum is changing colour from green it turns to brownish, I do not think this is normal and want to take back my colomycin, what do you think ? Will the side effects go away or should I stop (this new treatment) ? should I return to taking colimycin 4 mls ? I don't know what to do
excuse my errors/mispellings
thank you

Answer

Hello,

From your e-mail I understand that you feel less well and that you have lost lung function; moreover, you seem to be lost with your new treatment schedule and the side effects of this new treatment.

You should be aware of the fact that some patients may cough up a bit of blood with the hypertonic saline and this can colour your sputum differently (a lit more brown). Also, you should know that some patients do not tolerate well particular inhaled antibiotics and may present what is called a ‘bronchospasm’, a sort of asthma-like crisis.

Here is what I would propose to your consideration:
1) Avoid changing your treatment without contacting your physician; indeed, this will make your situation all the more incomprehensible for your physician and he could run into difficulties advising you correctly.
2) Talk to your physician with regard to your difficulties organizing your EVERYDAY treatment, there might be potential to find simpler and more practical solutions (e.g. physiotherapy at your home instead of the physiotherapist’s practice, reduction of the number of daily inhalations, …).
3) Talk to him/her specifically about the colour of your sputum and about your feeling of congestion/breathlessness with (some of) the inhaled medications.
4) If you have the impression that your health situation is declining, raise the possibility with him/her to have systematic/scheduled courses of iv antibiotics in order to stabilize.
5) Finally, consider working less hours and/or changing work if you work in an environment with smokers.

Above all, and this is the most important piece of advice, do NOT wait before talking to your doctor; your symptoms will probably not just wane away, there is, thus, no reason to ‘grin and bear ‘ as the saying goes.

Best regards
Dr Christiane Knoop

14.07.2011