The Long Way to "Arava"

Successful participation in a clinical study

by Birgit Ivers

12 years ago I fell ill with Wegener's Granulomatosis. I was 28 , just married and had to learn now to manage my new life as satisfactorily as possible with its constant changes between being hospitalized, doctor's appointments and being at home . The treatment started with "Cotrim" taken orally and was followed by a therapy with "Bactrim", then I was given "Cotrim" again. After a year there was still no improvement, so now they started an intervenous high-dosage therapy of Immunoglobulin, four weeks after that an Endoxan-Bolus-Therapy with additional Cortison and later on a constant Enoxan-Therapy. After an additional treatment with Immunoglobulin a partial remission at a stable level was diagnosed and after three yearsmy therapy was shifted to intravenous doses of MTX which were supposed to be slowly reduced. That attempt of reducing MTX was not successful although it was repeated several times, because my body showed old and new symptoms of illness mostly concerning the respiratory tract but not always signs of vasculitis.

Nearly eight years passed, occasionally I even felt well that is without any complaints. Doctors called it "partial remission". How was it possible to retain this condition? One day in 1997 the treating physician came to me with an interesting piece of news. In Bad Bramstedt Clinic, "my" hospital, a clinical long term study of a new medication called "Leflunomid" was to be carried through. I was thought to be a suitable patient and so I was thoroughly informed: since Wegener's Granulomatosis is a chronic illness it is necessary to be continually medicated in order to preserve remission. Up to then all the medication available could not prevent every single patient from a relapse and was often accompanied by severe sideeffects. Leflunomid had been tested on roughly 1.000 patients with different rheumatic illnesses and had shown good tolerance and positive effects. Another eleven Wegener patients were already being treated with Leflunomid to test its efficiency on this special illness.

After all those years of ups and downs I was ready to go this new way. All kinds of examinations followed then I started taking tablets which I had to collect every two weeks from Bad Bramstedt Clinic for three months, later on monthly. A supervision in constant intervalls accompanied the new treatment. From 1998 onward I spent two weeks in hospital every six months to be thoroughly checked. Since the amount of Leflunomid given did not suffice to keep my illness under control it had to be increased. Additionally I had to take MTX and sometimes another Cortison-medication.

In the meantime I have learned to accept the fact that my hair is no longer as full as it used to be and that even the single strands of hair are thinner than before. All in all I feel well. I was even spared vomiting and diarrhoea which are sometimes sideeffects. In the course of the clinical trial I was given Leflunomid free of charge and Hoechst, who wanted to put this medicament on the market after its clinical trial refunded my expenses for travelling to Bad Bramstedt.Pharmacies are offering Leflunomid under its brandname "Arava" by now. I hope that it will help many other Wegener patients spare the long way of trial and error and that "Arava" can give them immediate relief.


updated 01.03.2003