Wegener's Granulomatosis Support Group Of Australia Inc.

 

 

JACK CAHILL - born 27/9/30 - diagnosed 1993

About the second week in March 93, my eyes were suddenly (overnight) hit by what looked like conjunctivitis, all red but not sore. Being no different from anyone else, I let things go for a few days but eventually I went to my doctor who treated me for conjunctivitis. This treatment did not work so it was back to the doctor. Still diagnosed as conjunctivitis, cortisone was prescribed. This did not improve the situation. My eyes by this time were getting progressively worse in that I had great difficulty when I went out into the sun (squinting) and when driving, my short distant sight, about 200 metres, was so poor focusing, I could not hold my eyes on the same spot ahead ('Swimming' sensation occurred). Back to my doctor who this time referred me to an eye specialist, Dr Bill Austen on the Gold Coast. By this time it is Thursday April 8th.

Dr Austen diagnosed severe conjunctivitis, with ointment and eye drops and 'come back next Tuesday'. The treatment had no effect. Dr Austen then referred me to Professor (Dr) Laurence Hirst, Professor of Ophthalmology at the Princess Alexandra Hospital in Brisbane.

Dr Hirst examined my eyes (April 15th) and stated that as there was still quite an amount of medication in my eyes, he could not examine them to his satisfaction. An appointment was made for next week. However, he was of the opinion that my eye
problem was actually a systemic disease, which would eventually show itself. With this in mind, he arranged for me to see Dr Graham Hall for a check up. Dr Hirst was quite right in this (systemic) diagnosis but fortunately the disease stayed in my eyes only! The check up and subsequent blood test revealed naught.

April 22nd - with Dr Hirst and my eyes were deteriorating fast. Dr Hirst was showing his concern Even though he was convinced that the problem was systemic, he would do a biopsy of my eyes next week. April 29th - Biopsy done - samples sent to America - negative result.

May 6th - Dr Hirst stated that I was going blind. This was somewhat of a shock although I knew that something was drastically wrong. However, Dr Hirst and Dr Hall had arrived at a diagnosis - WG. In my dazed state, they tried to explain WG to me - it went right over my head! Cyclophosphamide 3 x 50mg and Prednisone 2 x 25mg was prescribed and to start that day.

May 7th - After only one dose of prednisone (the previous night), BINGO! I could see.

From this stage on, I visited both doctors in Brisbane through to July 93. Blood tests each week at Broadbeach plus the odd Xray and the medication adjusted accordingly. My general health and my eyes were improving to the point where I could drive my car from the Gold Coast to Brisbane for my appointments.

NOTE: The only symptoms of WG were my eyes and very heavy night sweats (boy, was everything wet in the morning) and tiredness and to this stage, early July 93, I did not have ANY of the side effects usually associated with WG medication except hair loss. The night sweats lasted from April through to mid September 93 (stopped abruptly). Strangely, at no period was there any pain - unlike most WGs.

Early July: I developed a dry hacking cough (Xray clear) followed by the appearance of blistery pimples on my chest. Swabs taken showed that Herpes Simplex had arrived to complicate the situation.

July 23rd - Admitted to the Princess Alexandra Hospital. My stay was 18 days. After 10 days of very high body temperatures, a shadow appeared on my lung. A broncoscopy was performed but all was clear. Because of my high temperature, the cyclophosphamide was stopped after a week in hospital. This was done to build up the immune system. I have not resumed the cycle, medication. My night sweats in hospital certainly kept the night shift nurses on their toes.

August 9th - Discharged from hospital - medication for home - Acyclovir 200mg 3 times daily and Prednisone 5mg each evening( NO CYCLO ).

August 19th - Dr Hirst very satisfied with my progress and unless my eyes flare up again, he does not wish to see me again (this is so to this date March 97).

August 31st - Dr Hall - pleased with progress - continue to see him monthly with blood tests and Xray prior to each visit.

November 14th - all medication ceased. March 17th 1994 - final visit to Dr Hall.

My time with the WG medication was very short and it would seem that my recovery is as complete as WG will allow. I have not had any indication of any of the symptoms of WG since 1993. I feel good!