An Odyssey

Report of a Churg-Strauss-Patient

von Peter Zelewski

Since 1974 I had been suffering from symptoms prior unknown to me , mainly sinusitis connected with fits of coughing which lead to a fracture of two ribs broke and a rupture of my diaphragm. In 1975 the first signs of asthma showed. I consulted doctor after doctor, mainly pulmologists as far as Hamburg, Pinneberg or Schleswig. An x-ray-examination in Schleswig showed the two broken ribs which I had "acquired" through coughing during travelling abroad. The treatment in Schleswig seemed successful, as I was prescribed an inhalator with medication based on cortisone, vitamins and asthma-medication, which brought great relief. Due to my general practitioner cooperating with the pulmologist and my insurance-company the supply with medication worked well: I was able to send a three-months-supply ahead to the next port. Thus I dragged myself from year to year, from doctor to doctor. In the meantime the asthma-attacks grew worse and quite often the Berodual-aerosol could not suppress the symptoms anymore, so that I had to rush to the refrigerator with my medication readymade and my inhalator waiting for me.

I had been a sailor but at that time was not working as such anymore, due to the smaller and smaller numbers of sailors needed (similar to coachmen or miners) Nevertheless my job required me to travel abroad for three months every now and then. I was working for a firm which set up shipping companies in third-world-countries. When I returned home from a three-months stay in Cameroon in 1988 I suffered a total collapse: I had high fevers, an infection of the lung with severe fits of coughing, swollen joints, blue patches on the skin, mainly at the smaller joints, attacks of asthma and inflamed nerves in my legs and feet. I was hospitalised in Itzehoe and put into isolated care since I had come from a tropical country. People didn't know how to treat me. So after three days I was admitted into Bernhard-Nocht-Institut, a hospital specialised in tropical diseases. I was welcomed by a nurse born in Africa, the country I had only just come from. I was put into a room with a beautiful view across Hamburg's port. This was the first improvement.

I couldn't have done without cortisone and asthma-medication
After eliminating the possibilities of parasites or similarly disgusting thins in my blood and body a high concentration of eosinophils, in my blood was noticed (more than 45%). The Bernhard-Nocht-Institut is known for its quick and correct diagnosis. On the ninth day of my stay I was visited apart from the routine clinics by Prof. Dr. Dietrich who is head of the hospital. He said: "Mr. Zelewski, we know now what you are suffering from, it is Churg-Strauss-Syndrome." I had no idea what that was. Prof. Dietrich told me that a young doctor, who while being a student had attended lectures by Prof. Gross, had remembered the connection between high EOS, asthma and CSS. In the meantime a biopsy of the lung and of the dark patches of the skin had been carried through and the vasculitis had been proven by histological examination. I was set at rest. I received high doses of cortisone and asthma-medication. In Itzehoe hospital I had merely received antibiotics which had no effect. I was started on 90 mg Prednisolone. A quick improvement of the symptms followed. I was not able to live through any night without cortisone, though. When I was dismissed after six weeks I was on 15 mg in the morning and 5 mg at night. Taking Cortisone and my asthma-medication have enabled me to live quite well over the years. I was no longer able, of course, to practise my job with long stays abroad with quite a few of them in tropical areas. So I started working for a Chinese shipping-company in Hamburg, where I am still occupied, although just one day per week.

Some years later my heart became involved
In 1994 my condition had worsened, my heart had become involved.I was already being treated in Bad Bramsted hospital. I had to learn how to handle a wheelchair, received Endoxan 200 mg - 100 mg daily. Nevertheless I suffered from frequent, almost constant pain in the heart. A treatment with immunogobuline showed surprisingly good results at first. The price of this medication is incredibly high, though, and after two or three months I was in the same condition as before the treatment. Now I was able to profit from the benefits of the hospitals vasculitis-centre. They co-operate internationally with other institutes, at which research is being done. The Mayo-clinic in Rochester, USA, had obtained good results in treating patients with CSS and Hyper-eosinophily with Intron-A, an alpha-interferone. Four patients at Bad Bramstedt hospital with CSS were invited to be treated with this new medication. All four of us agreed. The trial-treatment of 3 million units started the very day we were moved from wing "East 3" into the new wing "C1B". I have got on with the medication to this very day. The pains of the heart occur rarely and by now I am in a stable partial remission. I take 5 mg Decortin-H daily plus my asthma- and heart-medication. I still haven't given up hope that one day I will be able to live without some of the medication. During my stay in the Bad Bramstedt I met quite a few patients who live on a very low dose of cortisone or even without any medication.

As you can see I am an optimist, and I feel well.


updated 12.02.2004