Living with Morbus Wegener

This report has been held by Mrs. Ingrid Grobe-Woweries from 69502 Hemsbach at an Information Day for Vaskulitis Patients on May 4th 2002 in the Mannheim Clinic.

This report is meant to take away some fear from diagnosed patients, fear of the disease (which sounds so threatening) to help them live with it and to show them how it is possible to master life even with this disease. The heading "Living with Morbus Wegener" shall be changed into "life with a chronic disease" right away. A chronic disease is not only a challenge for the body but foremost a mental and social one, for the patient as well as for the caregiver and family. Maybe I can contribute to showing concerned ones how to keep up the quality of their life or even improve it. I see my disease as a task which life has put me, which will never come to an end, however. We have to remember permanently that people chronically ill will have to face constant strain and will repeatedly ask themselves, how much will I have to suffer, will I be able to live with it? Permanent pain, daily doses of medicine and the fear of the illness proceeding are a constant burden for the patient and will even have a bearing on their working routine, unless they have become incapable of earning their living already. Correct diagnosis and appropriate therapy are a real challenge for the patient's family doctor and even the specialised doctor. This means that people with a chronic disease will need more than just a good doctor! A close and friendly and partnership-like co-operation between the patient and his doctor/his clinic will help the patient to understand his disease and will thus further his comprehension into the necessity of the therapy and ist details. He will be informed in detail on success, possible risks and unavoidable side-effects. ! By frequent supervising examinations the chronic disease can be kept under control, thereby the quality of life can be kept at an acceptable level. At the same time there is the possibility for the patient himself to do something to cope with the illness (and further his health). Therefore the co-operation between patient and doctor is of vital importance.

You may want to ask how did it all start with me? For a better understanding let me first tell you that my disease is Morbus Wegener, which has to be treated lifelong, sometimes very aggressively. Before my "life with the disease" there was a period of first symptoms which were overseeable. It started nearly 8 years ago, a very diffuse appearance of obviously some kind of disease. From today's point of view I have to admit, however, that vasculitis did not hit me like a bolt from the blue. There were frequent colds which never really got better. Constant against which well known household medicine did not help. Additionally I suffered from frequent inflammation of my eyes, a tinnitus which lasted several months, attacks of trouble with hearing properly, fever, perspiration and headache together with fatigue and lack of motivation.

Then pains in the joints and swellings appeared. Neither my family doctor nor I had ever even slightly suspected my symptoms announcing this life-threatening disease despite my medical knowledge from being a doctor's assistant in a large surgery and despite my friend being a doctor herself. Quite suddenly - it is seven years back today - to my pain in talocalcanean joint and knee pain itching and numbness in my legs appeared additionally. An examination of the spine by a neurologist was inconclusive. Then one evening I could not lift my foot any more, I stumbled over my own toes. Furthermore both my lower legs and feet seemed to be paralysed.

Now things were set going very promptly. My unnerved husband in front of whom I had always played down my illness alerted the family doctor who sent me to the Neurologic Department of Mannheim Clinic directly. To cut a long story short: Very soon my ailments were suspected of being symptoms of Morbus Wegener. Fortunately Prof. van der Woude had come to the Clinic a few days before I was admitted. A young preregistration house officer knew this, had the correct judgement of my symptoms and arranged for a speedy chance of consulting Prof. van der Woude. The confirmation came after a biopsy of nerve and kidney. The situation worsened dramatically. When the diagnosis had been made I was put on the "standard starting therapy" cyclophosphamide, brand name "Endoxan", and high doses of Cortisone.

Now I started my "life with vasculitis", with "Morbus Wegener". The chemotherapy, - this is what the therapy basically is, nothing else -, was devastating. It was a very hard time and I realised only slowly that it was a chronic disease, which meant lifelong treatment and supervising examinations.

The next step was to rearrange my life. Everything had to be changed, focal points had to be newly defined. My emotional and bodily tolerance of strain was rapidly approaching a minimum; it was unthinkable for me, for example, to walk any further than 100 meters. In the course of one year I was torn out of my beloved job and bitterly had to face my incapacity of earning my living. The inflammation of my blood-vessels in the abdominal region caused strong colic-like pains, the origin of which was only found later with the help of a special examination-method and ended with an operation.

Due to the professional treatment by Prof. van der Woude and his team my miserable situation, which I have described previously, got better soon. "Endoxan" and Cortisone reduced my appetite dramatically, which is typical of chemotherapy, so that my body agreed with a very limited choice of food only, the only fruit I could eat was, for example, tomatoes. I suffered severely from loss of hair. The physical strain which often expressed itself in being extremely moody was met by adjustming the daily routine of life and or partnership to the new circumstances; I changed my diet, got myself a pet and started gardening which up to that moment had been a horror to me. At the same time I read intensively researchers' reports on vasculitides and exchanged thoughts and ideas with the treating doctors. All this led to an alltogether positive attitude towards life just by knowing that there were diseases far worse than mine.

To observe one's own body will become daily routine. This may help the treating physician in choosing the right medication. Every change, be it ever so slight, will be registered by one's organism and should be communicated to the physician in charge without any exaggeration. This implies the constant watching of the body's pre-warning-system, ANCA and the look at changes in laboratory-data in relation to possible changes in the patient's well-being. To find the correct dosage of the medication is one of the treasures of the physician's experience. A reduction of anti-inflammatory drugs, however desirable, can lead to a new flare of the disease which might not be noticed immediately. One has to be constantly to remember that this disease is principally not curable, not yet. It is one of the major tasks of the patient to constantly observe his eyes, his nose, his digestion, his bladder (blood in the urine?) and his blood-pressure. Additionally one's own weight and a possibly slowed down process of healing of wounds has permanently to be kept an eye on. The daily routine will include the exact dosage of the medication and the correct timing of taking it. This will greatly influence the effectivity of the therapy and the well-being of the patient. Cortisone, for example, has to be taken in the morning.

Due to immunsuppressiva and other medication the body is prone to infectual diseases, so the perpetual danger of infection has to be carefully evaded: one should keep away from people who have a chest-cold, Theaters, cinemas and similiar gatherings of people should be carefully avoided as well. Keep in mind aircondition! Touching of ailings in public places, for example, I avoid in principle. Washing your hands first after coming home has to become a routine. The fear of having a new flare will be your constant companion. Still, despite successful treatment new hospital-stays as an in-patient will not be totally avoidable. Vasculitis-patients will even have to be prepared for critical methods of treatment, which might in an acute case, for example if inflammation-indicators rise quickly, have to be used instantly. This includes anything from operations up to the risky blood-cleaning plasmapheresis (not to be mistaken for dialysis). One of the basic experiences of my having been treated for some years is to be prepared for suddenly and unexpectedly changing the medication or cancelling a planned holiday. On the average it took one year until the old therapy was not sufficient anymore. Luckily a suitable following therapy was always able to stabilise my health situation. The therapy occasionally implied medication which had not yet been approved, I was able to get the medicaments due to good contacts between the clinic and the manufacturers. Medicaments were amongst others Spanidin and Cellcept. The patient has always to be prepared to have newly to adjust himself to a different therapy. I have lived through all the variations of therapy mentioned above. Repeated examinations, mostly analysis of the blood, at intervals of just a few days or weeks or months, at best, are indispensable. The patient has thus to be prepared for the experience that after years of drawing blood and gifts of Cortisone the veins will be strained and only a few specialists will be able to draw blood properly. Nevertheless we must not close our eyes on the side-effects of Cortisone, however beneficial. Our disease is a chronic one with constant treatment necessary. There is the danger of decalciumating of our bones called osteoporosis (bone-density controls should be carried through) as well as thinning of the skin together with a dwindling of the subcutaneous fatty tissue. This will sometimes lead to bleeding underneath the skin due to the slightest pressure during work, especially in the area of the forearm. Such haematomes will take long in healing and there will be new danger of injuries when taking away adhesive plaster. During the summer covering one's forearms will produce problems, because many a neighbour at table will suspect the blue patches of originating from beating of the spouse. I had this happen on several occasions.

After having had medium strong cortisone-treatment for years cataracts will form. This is a slow process, so everything connected with seeing should be closely watched and discussed with the treating doctors. Driving will finally become impossible, maybe also due to the loss of strength in one's hands and feet. An automatic and power steering can feel like a miracle in that situation. An exchange of the dimmed lens will become unavoidable. In my personal case this was necessary after five years. The operation was free of pain and without any complication and the result was overwhelmingly positive.

I have always thought the special physiotherapy of significant value for me; it proved good when I suffered from signs of paralysis: The physiotherapy has been named "Vojta" after a Czech paediatric neurologist which seems to be similiar to akupressure and in my case has brought immense relief and quick help. The Vojta-principle is a kind of kinesitherapy which helps patients to gain normal movements again when they suffer from neurological troubles in movement as I had developed in my legs. My waddle (my husband used to compare my movements to Donald Duck's) has redeveloped into a fairly normal walking, something which had not been thought possible by some treating doctors.

Finally, however, I have to confess what might surprise quite a few of you: I have fairly little information on how co-patients cope with their illness, not even from patients at close range to our clinic. This might be due to the fact that every vasculitis-patient has his or her own fate with all the emotional problems connected. The founding of a support-group is thus in my eyes something badly wanted (the support group does exist by now), our motto must be: It is you you has to take the initiative, but you won't succeed on your own.

Besides so many negative aspects mentioned I will declare: Despite the illness it is possible to lead a fairly normal life in most parts, although goals set earlier, be it privately or occupationally, have to be readjusted. Other things will occupy a more prominent place in life.

Vasculitis has lost its immediate threat to life. We are indebted for this fact to numerous researchers in the medical area.

updated 19.05.2003