by Dr. Eva Reinhold-Keller, Rheuma-hospital Bad Bramstedt
In 2000 we treated the 1000th vasculitis-patient, he suffered from Wegener's Granumlomatosis (WG). WG with approximately 450 patients having been treated is the most common form of vasculitis in our hospital. Whereas in most cases WG is not really difficult to diagnose or to treat for specialised clinical centres there is a growing number of patients who have not yet been diagnosed precisely, patients without typical auto-antibodies, for example, like ANCA in WG. It is quite high a number of patients and since for the last ten years no additional bed has been set up, on the contrary, staff has been reduced, we are sometimes close to the limit of our capacity. By now occasionally patients have to be put on waiting-lists already - unfortunately. This does not go for emergencies, of course!
One part of our work is research on the epidemiology of vasculitides. Since the 1st of January 1998 we have registered every newly diagnosed vasculitis-patient in Schleswig-Holstein and Baden-Wuertemberg, both regions together with a total of some five million inhabitants. 41 to 55 people per 1 million inhabitants fall ill with vasculitis annually (outcome: www.rheuma.mu-luebeck.de). WG is found in six to eight people/year/million inhabitants. More and more often elderly people are diagnosed with WG. It shows that doctors take this illness into consideration at an earlier stage as compared with the past, even in elderly patients, where formerly certain signs of vasculitis were explained as "normal" aging signs, which were not taken any further notice of. People aged 50 plus fall ill with vasculitis at a 3-5 times higher rate than people aged below 50. Today vasculitis is diagnosed at a much earlier stage, very often before it has developed into a life-threatening state. 10 - 15 years ago it took nine months on the average from first symptoms showing to getting a correct diagnosis, today it takes 3 months.
Treating doctors and patients, too, profit from the vasculitis-register. Each newly diagnosed patient gets an Info-Set containing information on the illness itself, on support-groups, on patient's training, on literature etc. We regularly invite doctors for clinical visits to our vasculitis-departement, to discuss the patient's problems right at the patient's bedside. The vasculitis-register was awarded the "Paul-Boerner-Prize" (a work of art) at the 125th anniversary of the "Deutsche Medizinische Wochenschrift" (DMW, German Medical Weekly) in 2000. Paul Boerner was one of the founders of DMW, which today belongs to the most widely read and most renowned medical journals in Germany.
An essential object of a specific aid-campaign of the Bundesministerium für Wissenschaft, Bildung und Forschung (ministry for science, education and research, BMBF) is vasculitides. The BMBF has called upon establishing nation-wide medical networks of competence. 150 applications from all fields of medicine were reviewed. After a thorough examination only ten were left over, one of them was the network for rheumatic competence (www.rheumanet.org). Special clinical centres are supposed to make their knowledge and experience available for others too in a concise way thus improving the supply of medical care considerably even in remote corners, which is very important for a rare disease like vasculitis. Scientists investigating the underlying causes of ailments are closely connected to doctors, so that new findings will quickly find their way into practical use with the aim of establishing new, less aggressive forms of therapy.
The Luebeck/Bad Bramstedt Vasculitis-Centre conducts a treatment-study in which Methotrexat is compared with the new substance Leflunomid which is used to prevent patients from suffering a relapse. Both substances have been used for quite some time, but have as yet not been compared directly with each other. 120 patients will be taken into the study, a randomized 60 of them will get Methotrexat, the other 60 will get Leflunomid. Only hospitals which have sufficient experience in treating vasculitis-patients will take part in the study. The Ethics Committee has thoroughly investigated the study. Should you be asked by the network for rheumatic competence to participate in a study, be it this one or any other, you should inform yourself as thoroughly as possible before accepting. You can draw back any time without any further explanation. On the other hand it is not possible to find optimal treatment without extensive studies.
Through another project at our hospital we are going to investigate if the training of vasculitis-patients will positively influence the long-term-course of the illness. For some years now we have offered seminars "patients' training" which are very popular, but up to now we have not investigated their impact on the long-term-course of vasculitis.
A little while ago the so-called TNF-alpha-blocker (TumorNekrosisFactor alpha) was approved of for treating severe cases of Rheumatoid Arthritis. This TNF-alpha-blocker directly attacks the transmitter TNFalpha, which is strongly increased in these patients. Increased levels of TNFalpha have recently been found in vasculitis-patients, too.
Whereas up to now all the methods of treatment have aimed at braking the over-active immune-system in general and have thus lead to attacking healthy cells, too, treatment with TNF-alpha-blockers may be aimed more precisely at the defects leaving healthy cells largely unharmed. Up to now these substances (Enbrel, Remicade) have only been used in severe vasculitides if the usual treatment does not show any effect. The results are excellent. Since these substances are fairly new we don't know anything about long-term side-effects, though. The price of 15.000 Euro per year for this treatment is not decisive, but cannot be ignored either, since it is about ten times the amount a treatment with Methotrexat or Leflunomid would cost. The next years will show what kind of patients might be suitable for an earlier treatment and what kind of long-term side-effects might occur.
Let me give you a short outlook on the year to come. We are planning to completely revise the vasculitis-guide "Vasculitis - what is it, how to recognise it, how to live with it". The current edition is still up-to-date on all the aspects mentioned, but some aspects, for example a chapter on nutrition, are missing.
In the current edition not every single form of vasculitis has its own chapter, for example vasculitides which were little known then like Vasculitis in Hepatitis C or isolated vasculitis of the brain.
If you as a patient should miss any aspect let us know so that we can meet your expectations better.