CSS In Germany, by Peter Zelewski

Peter Zelewski is a Churg Strauss patient in Germany. He is a founding member of the Vasculitis-Support-Group at Bad Bramstedt Clinic. The aim of this group is to give concerned ones as much information and support as possible. Peter is currently the speaker of the German Vasclitis Patient's Support Group http://www.vaskulitis.org/

This is Peter’s story as written for the Vasculitis Foundation newsletter:

In January 1945 my mother fled with her five children and my grandmother from our home located in a small seaside resort near Koenigsberg in Eastern Prussia. We found a new home in the north of Germany, in a land between the seas called Schleswig-Holstein. Maybe this closeness to water made me become a sailor.

Vasculitits, manifesting as Churg-Strauss- Syndrome, influenced my life to a great extent. By the time the first symptoms showed I was married with two sons. My family always stood by me, was my very own support group. People like me then depended on their families and maybe some good friends to cope with all the problems that this disease brought on us as support groups were widely unknown in the eighties.

In 1994, with the help of some clinical staff, some vasculitis patients founded a support group in the Rheuma Klinik in Bad Bramstedt. Our aim has always been to help patients and their families make this disease better known and to form local support groups.

The following story tries to describes the long and hard way from my falling ill to diagnosis and therapy.

Since 1974 I had been suffering from symptoms prior unknown to me, mainly sinusitis connected with fits of coughing which even led to the fracture of two ribs and the rupture of my diaphragm. In 1975 the first signs of asthma showed. I consulted doctor after doctor, and many pulmologists from all over northern Germany. I dragged myself from doctor to doctor year after year. In the meantime, the asthma attacks grew worse and quite often the asthma-aerosol could not suppress the symptoms anymore, so that I had to rush to the refrigerator where I kept medication ready made and an inhaler waiting for me, which my doctor had prescribed for emergencies.

I had been a sailor but at that time was not working as one anymore, due to the smaller and smaller numbers of sailors needed. Nevertheless my job required me to travel abroad for up to three months at a time now and again. 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, pneumonia 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 isolation since I had come from a tropical country. After three days I was admitted to the Bernhard-Nocht-Institut in Hamburg, a hospital specialised in tropical diseases. After eliminating the possibilities of parasites or similarly disgusting things 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 precise diagnosis. On the ninth day of my stay I was visited by Prof. Dr. Dietrich who was at that time head of the hospital. He said: "Mr. Zelewski, we know now what you are suffering from, it is the Churg-Strauss-Syndrome." I had no idea what that was. Prof. Dietrich told me that a young doctor, who as a student had attended lectures by Prof. Gross, now head of Bad Bramstedt hospital's Vasculitis Center, had remembered the connection between high EOS, asthma and CSS. In the meantime a biopsy of my lung and of my dark patches of the skin had been carried out and the vasculitis had been confirmed by histological results.

I was ordered to rest a lot. I received high doses of cortisone and asthma medication. I started on 90 mg Prednisolone. A quick improvement of the symptoms followed. I was not able to live through the night without cortisone, though. When I was dismissed from the hospital after four 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, quite a few of them in tropical areas. So I started working for a Chinese shipping company in Hamburg, working ashore on an office job.

By 1994 my condition had worsened. My heart became affected. I was treated in the Vasculitits-Centre of Bad Bramsted hospital. I had to learn how to handle a wheelchair, and daily received 100 mg - 200 mg of Cyclophosphamide ( Endoxan). Nevertheless I suffered from frequent, almost constant pain in the heart. The treatment with immunoglobuline showed surprisingly good results at first. However, this medication is incredibly expensive and after two or three months my condition was the same as before the treatment.

Now I was able to profit from the benefits of the hospital's vasculitis centre. They cooperate internationally with institutes, where as well research is being done. The Mayo Clinic in Rochester, USA, had obtained good results in treating patients with CSS and hypereosinophilia with Intron-A, an alpha-interferone. Four patients with CSS at Bad Bramstedt hospital were offered treatment with this new medication. All four of us agreed. The trial treatment with 3 million units of Intron-A started in May 1995. I am on this meededication to this very day. The pains in my heart still occur occasionally but 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 stays in the Bad Bramstedt hospital I met quite a few patients who live on a very low dose of cortisone, or even without any medication at all.

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

Peter Zelewski
July 2006

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