Although I never thought about it much the pain at the back of my left foot had become quite annoying. Only recently had I knocked it on a shelf at work. Being the busy woman that I was at the time, I chose to ignore the swelling that seemed to rise and fall around my ankle. After seeing my doctor, he suggested that I see a physiotherapist. After several visits, my foot was improving but now my knees had become sore and a little stiff.

Working late one night I started to get a headache which turned into a severe migraine lasting four days. My parents converted my bedroom into a dark room where no light could enter to help reduce the pain. I was confined to that room for four days and was administered pethadine daily. I could feel my health descending rapidly. I was tired, had no energy, drinking copious amounts of water and passing fluid constantly - it seemed as though as soon as I had a drink I went to the toilet. At the end of the fourth day, the migraine disappeared. 

I was still in a lot of pain however with my knees. Over that weekend my right knee had swollen to twice its normal size. I could not walk and my parents took me to the local hospital. My first specialist was Dr Bruce Cleland. He suspected WG and introduced me to prednisone. I was placed on a daily dose of 50mg.  Dr Cleland did an ACNA blood test to confirm if he suspicions were right.  It came back positive, I had Wegener’s Granulomatosis.  The only ACNA that ever came back positive to date.  Every other time the blood test was preformed it came back inconclusive.  It was a mystery to every doctor that ever handled my case.

The next day I woke in hospital a new person!!! My parents could not believe the change the prednisone had made. They were definitely working!

Sitting in my bed I felt a twinge a pain in my cheeks, nose, behind my eyes and my teeth. I was 23 years old and this was only the beginning of something that would change my life forever. That twinge turned into regular bouts of head pain. They were so intense I could not lift my head, talk or walk - just scream. It was in a word: horrific.

Minor relief was achieved through administering pethadine. I was completely dehydrated - drinking up to twenty litres of water a day and passing water every 15 minutes.

Next were the persistent nosebleeds, the accelerated loss in weight, inflamed and painful joints, ear problems and eye problem i.e.-short sightedness. Everything seemed to attack me at once and my life seemed to stand still.

Then a new doctor was next - Dr Dan Milder (He was convinced that I was delusional and at one stage put me on mind altering medication but not for long, I wised up and then we never really got along) and a new hospital – The Prince of Wales, Sydney.

I spent the next eight weeks in that hospital consumed in daily routines of test after test - MRI's, cat scans, x-rays, biopsies, peripheral vision and endless blood tests. 

Tests proved a prognosis of WG. Two sinus operations confirmed a disease in my sinus tubes. But a new and more complex problem had evolved, it was to be the focus of many ongoing problems. They discovered during MRI that WG had surrounded my pituitary gland. Three hundred times the average size of the tiny gland, it was putting a lot of pressure on my optic nerves. Consequently eye tests were rendered daily to monitor my eyesight and ensure it was not deteriorating.

As decision had to be made a course of action to get the gland back down to reasonable size before anything happened to my eye sight.

My initial medication was 3000mg – Yes, 3000mg - of prednisone in two and a half days. I inflated to a size 16 from a size 10 in a matter of three days. As a result of this medication, my skin endured unsightly stretch marks that were two inches wide. Cyclophosphamide was discussed as the proposed medication but after doing some research of my own on the treatments used for WG, I was very adamant that I was not going to take the path of that medication, should there be an alternative.

I had discovered the severe side effects of the drug and as the disease had never travelled to my lungs or kidneys and being so young, I wanted to take a chance on alternative treatment. A side effect I am sure all women are aware of is infertility.

This was my main concern because I had not had children and more importantly wanted the choice.  I didn’t want my decision made for me.

A suggestion was to freeze some of my eggs. However the eggs would only stay active for a period of five years and not being married yet I did not want the stress or decision of having to conceive in this time frame.

Another interesting symptom was back in August 1994. I began to experience pain in my ears. Fluid had built up in my eardrum and I had to have a grommet tube inserted into my ear to let infected fluid drain.  I believe there are a few people in the support group that have had this as their first symptom.

The high doses of steroids effectively reduced the size of the pituitary gland, not to normal but to a more ‘safe’ size.

Throughout all this I felt as though my life had been completely turned upside down. It had been six months now since I had been to work nor had a healthy lifestyle.  It is amazing how life can just shut you down and throw you a massive curve ball but I have to say the only thing that ever got me down was the weight I had gained through the prednisone.  Otherwise I always felt optimistic and rarely felt upset about my new circumstances.  

When I was in hospital a board of fifteen specialists and approximately twenty medical students were in a conference meeting and I was asked to attend to discuss my WG and my medication. I sat in the front of the room while all different doctors asked me questions on my symptoms and past health history. I was desperately hoping that one of them might help me.

Professor Dennis Wakefield was one of the attending doctors. He was consulted about my case half way through. Professor Wakefield was a very understanding and kind man and was influential in the decision for my combination drug.  He took over from Dr Milder much to my delight.

In August 1995 my parents made a family decision to move from Sydney to Hervey Bay, Queensland.  I believe it helped greatly, living away from the city and into the country, my health certainly improved to a degree.  Here I was referred to my favorite specialist Dr Patrick Hogan (Immunologist) at the Princess Alexandra Hospital in Brisbane. I was also presented to an endocrinologist – Dr Ross Cuneo, who I remained in constant contact with.

By September 1995 my pituitary gland was engulfed by WG again. After many discussions (most of the doctor’s wanted to put me on cyclophosphamide) a decision was made on my combination drug - Methotrexate at 15mg. Cyclophosphamide was a major issue for my doctors and I. The drug can still be used if Methotrexate decides to stop working. This was always at the back of my mind. Even though the side effects of Cyclophosphamide are devastating, I would have to say that I would give in and start on this drug as being healthy and having a reasonable lifestyle in the long run is important to me.

The dehydration persisted and in September 1995 I was diagnosed with Diabetes Insipitus. I was treated with Desmopressin Intranasal Solution (DDAVP) for this and was told that this D.I. would be around for the rest of my life. A lot of hormones from my pituitary gland have diminished as a result of the WG. My periods were absent for nine months before my doctors put me on the pill. I will only be able to conceive with the help of hormonal injections and will never be able to breastfeed. There are nine or so major hormones that release from the pituitary gland every day.

Once this was diagnosed, I felt that I was actually moving forward – finally.

I had a positive attitude with the help of my parents and friends. That is where the true strength of my recovery lies - through the love and support of my parents.  They are and still remain my rock, my soul and determination to get through difficult times in my life.

My parents – Keith and Muriel, my sister - Bron and my brother - Brad all stood along side me with every crucial decision and every twisted turn my disease took me to. 

My family is reason why my life turned out to be so successful in the end.

Just before Christmas 1996 I was on the last leg of my treatment with prednisone. Two weeks before Christmas, I came off them completely. I felt so good about myself and was I looking forward to working back down to my original clothes size. I was swimming every day at the beach and began hunting for new job prospects. Two or three weeks had gone by and I had lost a stone - fantastic I thought. But in the back of my mind I knew something was not right. I was feeling incredibly nauseous and very tired.

My joints hurt, I tried to put this down to me beginning to exercise again. Plus the weight loss was so rapid. I had recently recovered from two bouts of flu and tried to tell myself that this was the reason why. But WG had other ideas and made a come back tour.

I was diagnosed with a relapse on the 31^st December 1996.

I was shocked and upset that I may have to go back on prednisone. I was told that the two bouts of flu and the lack of prednisone stimulated the WG disease around my pituitary gland and back into some of the sinus tubes. I was administered 50mg of steroids and my Methotrexate was increased to 20mg and then to 30mg. This treatment had again contained the disease.

Today, I live a very different life than the one I had two years ago but I feel lucky in a way to be able to let others know about what happened to me. I was told by my doctors that I was the third person in the world to have WG around the pituitary gland (at that time).  That made me feel very isolated but I learnt to reach out and help others in need and spoke to other WG sufferers.  You soon see you are not alone. To tell of my experience not only helps those who are in the midst of WG but helps me every time I tell my story.

I wish everyone that reads my story an abundance of health and happiness.

Should you ever be the beautiful coastal town of Hervey Bay QLD, be sure to drop in or call on 07 4124 7366 or 0407 664 177.

(Written 1997)

Hello everyone!

Wow, what a long time ago now.  It’s now January 2006 and gee whiz time flies…  I have done so much with my life in the past 10 years and have had a few hiccups along the way.  I would like to write a part 2 this year and share my last 10 years with everyone … good health to everyone in the meantime. LBD.