CFW Newsletter - MAILBAG

Lucy Boden

I am a scientist with a degree in Physiology and I happen to have Cystic Fibrosis.

From my teenage years and up until recently, I have been nebulising Colomycin or Tobramycin every day, to try and keep my lungs free from infection. However as the years passed by I was noticing that my chest seemed to be getting progressively worse with a decline in lung function. Even a recent admission for intravenous antibiotics did not produce the improvement I hoped for.

On my latest visit to my CF specialist in Brisbane, Dr Scott Bell, I noticed a newspaper clipping on the wall with an article about Australian surfers with CF. It stated that people with CF who surfed every day suffered very little lung disease because of all the salt spray they breathe in.

I mentioned my interest in the article to my CF specialist and asked if I could try a salt spray treatment for myself. He instructed the hospital pharmacy to make up a hypertonic saline solution (7g sodium chloride in 100ml sterile water), which I then nebulised (5ml). The effects were instant and dramatic - thick, viscous bronchial secretions that I had previously not been able to clear, came away easily and with the consistency of water following this simple, drug-free treatment.

I have continued to nebulise the solution every morning for over a month now and have enjoyed a clear chest throughout. My lung function has also increased, so I am obviously extremely happy with the outcome. It’s like a daily dip in the ocean from the comfort of your own home!

From subsequent internet searches, I have found many scientific research papers advocating the use of nebulised hypertonic saline rather than the usual isotonic (0.9%) saline, as a more beneficial solution in treating diseases of impaired mucociliary clearance, such as bronchiectasis, asthma, and cystic fibrosis.
The physiology of osmosis behind this principle makes sense, as the salty solution simply ‘draws’ water out of the cells lining the lungs, making secretions less sticky and easier to shift. Studies have shown that hypertonic saline has very comparable effects to Pulmozyme made by Roche (very expensive treatment at $75/vial).

At the moment you cannot obtain vials of hypertonic saline in the correct strength for nebulising (7%); only plastic vials of 0.9% or 20% sodium chloride are available. I currently mix my own solution by drawing up 1ml of 20% saline and 2ml of water for injection in a 5ml syringe. However I have written to AstraZeneca to suggest they include 5ml vials of 7% saline in their range, as this would make it much more convenient to nebulise.

I hope my experiences may be useful to others.

Lucy Boden (May 2004) lucyboden@optusnet.com.au

Update February 2005:
I had no response from AstraZeneca about my idea for a 5ml vial of 7% NaCl. It would certainly make life simpler. I continue to have my healthiest year ever with no infections, thanks to hypertonic saline. It would be great if my article could help others achieve such a good outcome. It is so simple and cheap that even patients in the poorest countries can give it a try.

My Brisbane (Australia) specialist has got many CF patients on the therapy now.
They are also just starting a trial comparing Hypertonic saline with Mannitol (another mucolytic osmotic agent).

Editors note:For a list of the references please contact us at editor@cfww.org and check: http://www.ncbi.nih.gov/PubMed

The drug company that takes on the challenge of producing a simple form of nebulized hypertonic saline will earn the gratitude of thousands of CF patients.

Comment on Lucy Boden’s letter

Dieter W Rossboth, MD
Institute of Environmental Medicine, Head
A-1082 Vienna – Austria
Europe
dieter@rossboth.at

Lucy Boden vividly describes her experiences with cystic fibrosis. She describes a successive deterioration in her lung function until she began using Inhaled Hypertonic Salt Solution (IHSS). She describes that she can personally report beneficial effects since using IHSS daily for one month. She also provides some scientific proof for the efficacy of IHSS, citing relevant scientific literature. She also brings to our attention the finding that CF patients regularly surfing in the sea in Australia, have reported significant improvement in chest symptoms.

IHSS provokes irritation of the bronchial system and stimulates mucus excretion through coughing, as a physiologic reaction to IHSS. This effect is also useful for obtaining sputum from the bronchial system and deeper parts of the lungs for diagnosis of various diseases, such as tuberculosis and other infective and non-infective lung diseases.

IHSS also provokes activation of the body’s inflammatory or defence system and broncho-constriction (narrowing of bronchi), therefore, great caution is needed in patients with asthma – IHSSs can provoke asthma attacks in the asthmatic patients!

Used as a complementary therapy, IHSS may well support antibiotic therapy and help cure infective lung diseases in children (Mandelberg 2003, Sarrell 2002). Evidence for beneficial effects of IHSS in patients with cystic fibrosis is however weak, with only a few publications dealing with IHSS in CF patients and conclusions are noncommittal (e.g. Daviskas 2002, Hirsh 2002, Robinson 1997, Rodwell 1996, Riedler 1996).
It is important that decision making in medicine adheres to “Evidence Based Medicine” which is derived from analysing the results of well designed Epidemiological (the study of occurrence and distribution of diseasse) studies and/or controlled clinical trials. The Cochrane Database is one of the main tools for processing information from epidemiologic studies and clinical trials. At this time, the Cochrane Database provides insufficient data for broad support for recommending the use of IHSS for therapy in CF patients. Reviewers of the Cochrane Database state that currently there is insufficient evidence for support of use of IHSS as routine treatment for people with cystic fibrosis (Wark 2003, Wark 2000). There is also insufficient evidence for support of the use of IHSS as routine treatment for various pathologic lung conditions (Wills 2002, Wills 2001).

Conclusions: At this point in time, the use of IHSS in CF patients is a matter of the patient’s own responsibility! Generally, severe or harmful effects of IHSS in non-asthmatic patients are not likely. CF patients should keep expectations realistic and make sure that IHSS is conducted under professional medical supervision. More detailed research on this specific topic is greatly needed. Hygiene aspects of inhalation therapy are generally of key importance for the CF patient, and these are described in more detail elsewhere (Rossboth, IACFA Newsletter 2001; 60: 5-12).

Personally, I appreciate any tools that strengthen patients’ responsibility and support their personal involvement.