For some years I have been reading numerous patients’s stories on this website. To be honest, some of them made me frightened. They did have supportive words, but I got the feeling that suffering from Morbus Wegener would prevent me from having a normal life with a family, a satisfying profession, the ability to travel etc.
Let me tell you some facts, to start with:
My name is Antje, I am31. My symptoms started when I was 23. I was in the middle of my exams and suspected a very bad flu which I tried to ignore at first. After some weeks I started wondering why my nose was still not free again. The first ear-nose-throat-doctor I consulted told me that my nose showed signs of too much dried nasal mucus. He thought the reason might be a deviated nasal septum, he recommended an operation. Although I couldn’t see any reason why with a deviated septum I had not suffered from too much dried mucus all the time I agreed and had the operation. Instead of feeling better after the operation things turned worse: the bridge of my nose broke and I had a saddle-nose. Deeply shocked I called my doctor. He told me the reason must be a faulty operation. He was not friendly at all, he even said that I had had a deformed nose before the operation. Well, everybody was asking me which box-champion I had met, but one does believe what a doctor says….at least in the beginning.
I have had too much dried nasal mucus for some years afterwards and kind of grew accustomed to my deformed nose, until I was in stress again due to another exam. Suddenly I suffered from extreme head-aches which didn’t respond to any painkiller. An MRT showed multiple granulomas in my sphenoidal sinuses. The new ENT-doctor I was sent to prescribed antibiotics, telling me that those granulomas were inflammations. I tried three different ointments, the fourth eventually helped a bit (Cotrim forte). Even the mucus problem seemed to improve. As soon as the package was used upthe problems started again, though. The ENT-doctor refused to renew my prescription after some time. So I went from doctor to doctor telling different stories in order to get new prescriptions, because with Cotrim I felt much better.
After having finished my practical training I was looking forward to finally start my profession. We moved house, everything seemed to be just perfect. I tried not to think about my mucus-problem and even ignored my headaches. Being overwhelmed with my new job I even forgot to look for a new family-doctor. After some months my health started to deteriorate. All the old symptoms were back. Additionally I had severe joint-pains, I urinated blood, I couldn’t hear properly and I had a blurred vision. I wondered why the soles of my feet felt numb all the time and why I suddenly suffered from rashes on my legs. I went from specialist to specialist, but nobody seemed to be able to help me. I finally went to a new ENT-doctor. She looked into my nose, told me that the symptoms reminded her of another patient of her and sent me to the clinic for a biopsy. She didn’t mention what she suspected or what the doctors would look for in the biopsy. The biopsy didn’t give any results, though, so I was sent back home. Back home I panicked; I couldn’t get rid of the feeling that some serious illness was the cause of my problems. I decided to do some internet-research with the combination of my symptoms. I found the website www.vaskulitis.org and felt sure some kind of vasculitis was what caused my symptoms.
I made a date with a rheumatologist and persuaded him to look for C-Anca. He did that, thankfully, he was really concerned about the state of my health. Some time later the clinic called. They had only now found the time to test my blood, and they had found C-Anca. That was finally the start of more tests and the diagnosis. In the end a kidney-biopsy proved a heavy kidney-involvement. The medication-therapy that most of you know all too well followed: cyclophosphamide in high doses, cortisone, medication to lower my blood-pressure, etc. The medication helped quickly. I steadily improved. After three months of cyclophosphamide my medication was changed to Cellcept (for two years) and finally to Azathioprin. I have been taking it for three years by now.
The first year after the diagnosis was filled with doctor’s appointments. My C-Anca was much too high and so I awaited every new test with high tension.
Today, after nearly four years, my C-Anca is still much too high one of the last tests in Bad Bramstedt’s clinic set a new record with1:2560. But I am not tense anymore, because I feel well and except the dried mucus I don’t suffer from any other symptoms anymore.
My illness has finally moved out of my main focus- I decided to have a positive attitude towards life and not to have the illness dictate my life. I know that I am lucky, because compared to other patients I am basically symptom-free. I have been working full-time in the last years. I have married, we have built a house and right now we are looking forward to the birth of our first daughter, I am 7 months pregnant. I just hope to be able to lead a “normal” life. Should my Wegener ever return I won’t panic anymore, since I know that it can be treated.
Hello again here is a followup to my story:
In October 2009 I gave birth toour little daughter. 7.5 mg cortisone and 100mg Azathioprin controlled the little relapse that set on after giving birth.
Best wishes, Antje
Two years after the birth of our daughter our lovely son has been born in June 2011. This time I had no relapse. I have been in remission without any medication for nearly three years by now. My “therapy” consists mainly on avoiding infections. My Wegener has always resurfaced after or even together with any kind of infection. Everytime (twice a year) I do get an infection my motto is “Hit hard and eary”. I take cortisone for 3-4 days (20mg/10mg/5mg) and a package of Crtim forte. It sounds very much but I coped well with it. I take some vitamin D additionally. It seems that the connection between autoimmune-disorders and vitamin D has been proven. In between, whenever the problems with my nose intensify I take some antibiotical-cortisone-ointment
I have been so well that I wanted to share my story, although by now I hardly ever visit this website. Both my nephrologist and my rheumatologist (I visit them twice a year for controlling) tell me that this is not the way schoolbooks teach medicine but since I am successful I may continue. My c-anca is still quite high, but it looks like it doesn’t need any treatment.