(Updated May 2002 )

Jan 96. Noticed signs of summer cold with sniffing, very thick mucous and a dry cough. Also, I would wake in the morning with encrusted eyes and a sticky clear film over the eyes.

Feb 96. Deafness developed in the left ear and I had a severe attack of arthritis. This did not seem unusual as I had endured osteo-arthritis over the years. My doctor prescribed Voltaren as usual, but this time it did not seem as effective. Aldecin Spray was tried in my nose but it caused a very painful reaction inside the nose. Zyrtic tablets were tried without success.

Next I was referred to an E.N.T. specialist who prescribed prednisone tablets at 25g/day without success and caused swelling of the face. Pressure seemed to be developing in the sinus and the ears.

After two weeks of zero improvement, my doctor ordered an ear operation to insert a vent tube to assist the clearing of the middle ear mucous.

Mar 96. An ulcer developed on the lower white of the right eye orbit.The ENT specialist showed little interest in the eye problem, other than suggest we find ourselves an Eye Specialist.Our new specialist did not suspect anything major, prescribing Chorsig ointment and 'return in two weeks'. Of course the eye ulcer worsened during this time.

Late in March 96, the operation (ENT) was performed, inserting a tube in the left ear. For a short while the left ear improved, then the sinuses flared up and the right ear became 'blocked'. My hearing became like the hearing you get whilst swimming under water.

Apr 96. Returned to ENT specialist complaining of failing sense of hearing, emerging tinnitus (buzzing sounds in the ears) and worsening sore eyes and sinuses. He suggested an operation to clear the nose and sinuses, but first to find ourselves another ENT specialist for a second opinion because he said he was baffled by the symptoms, He ordered a CAT scan of the nose and the sinus area. An operation to clear the nodules was arranged.

Apr 96. We selected ENT specialist Mr Gary Sherman. He in turn suggested the same operation. He then referred me to Eye Specialist Mr Justin O'Day to attend to the worsening eye 'ulcer'.

Surgery to remove the 'ulcer' was performed - pathology reported 'ulcer' to be a 'non specific      gramuloma'.

Meanwhile, my mental state was deteriorating with the progression of bad news and the prospect of another operation with my nose. I visited a psychiatrist who diagnosed acute anxiety and   counseled me in readiness for the nose operation. I had a sinus operation some twelve years back and had been traumatized by the experience.

May 96. The nose operation took place, the septum straightened, nodules removed and sent to   pathology, who subsequently reported nothing sinister.

Still in hospital, a second granuloma was developing in the same eye as before - Dr O'Day ordered an immediate operation.

I was not recovering very well from the nose operation and my ear condition was worsening -pain, pressure and tinnitus. Dr Sherman ordered another operation to insert a vent tube in my right ear to relieve pressure and facilitate drainage.

Meanwhile, eye inflammation worsened (both eyes) and another granuloma appeared to be        developing in the left eye. I was discharged after eight days. I had now reached the depths of      despair. As well as worsening eyes, my nose/sinuses had not healed, my ears were failing, lost were the senses of taste and smell, appetite was gone, weight loss of 7kg, joint pains, malaise, anxiety, depression and a worsening dry cough.

Dr Sherman and Dr O'Day conferenced and ordered an ANCA test, both coming to the conclusion that my condition was most probably WG. (Note that pathology had failed to detect WG from samples from both eyes and nose). Was referred to clinical physician Dr Robert Lodge who has WG experience.

Jun 96. Dr Lodge confirmed WG (1st June 96). ANCA level was 104. He ordered hospitalization immediately to commence solid and regular WG drug therapy. By this time, my cough had    worsened and I noticed bright red clots being coughed up.

At this stage, my gums were beginning to bleed. Lung radiology and renal tests mercifully showed no WG activity. By an odd coincidence, the radiologist was herself a WG now in remission. Her counseling was inspirational. I was told that my WG was 'limited WG'. I thought - God help other WGs if all I have is 'limited WG' !!!

I remained in hospital for 18 days - I left hospital with symptoms not so bad but still in evidence.

Medication. Cytoxin and Prednisone were gradually increased to 150mg Cytoxin and 100mg Prednisone.     After 7 days my ESR read 75. A week into treatment, my condition started to improve - at long last.

Drugs prescribed on release:

Drug Dosage For

a) Cyclophosphamide 150mg/day Immuno suppressant

b) Prednisolone 50mg/day " "

c) Prednisone drops 4 times/day - both eyes Eye granuloma

d) Prothiaden 100mg/day Anti depression

e) Xanax 1.5mg/day Anxiety

f) Panadol 1500mg/day(average) Analgesic

g) Sofradex 6 drops /day/year Ear infection

Jun 96. A week after release, I developed a staph infection in the sinuses, so was prescribed:

Rulide 300mg/day Antibiotic

Rulide did not prove effective, so Dr Lodge prescribed Eryc. This seemed to work better. (Because I have allergies, I cannot tolerate penicillin and sulphur based drugs such as Bactrim - the favourite for WGs).

Aug 96.   ANCA levels down to 30 - Prednisone reduced to 25mg/day. Eyes very gradually improved.    However, my ears and nose and sinuses remained severely affected. At this time, a tear duct of the right eye became blocked. This caused it to swell in the form of a lump which Dr O'Day lanced during a visit.

Sep 96.   Another staph infection developed in the sinuses requiring another course of Eryc. The lanced tear sac now discharged pus. This had to be expressed twice a day. Blood test revealed raised ESR to 30. The ANCA test at long last yielded a negative result. Dr Lodge stated that he wanted at least two months of low ANCA levels before reducing Prednisone, currently at 50mg/day. Unfortunately my ear function continued to deteriorate and tinnitus worsened. Regular visits to Dr Sherman to clear nostrils and sinuses with vacuum suction device.

Oct 96.   Remaining problems during this month include : severe tinnitus in both ears - hearing loss - nose too tender to support spectacles - disoriented hearing (which direction ?) - thinning hair - swollen floppy soft top palate interfers with speech - breathlessness during the day - lack of energy - bruising - skin appears to be thinning - night cramps - hot flushes night and day - moon face and hump on neck - daily clearing of nose by flushing with warm running water using cupped hands, later saline water then vaseline.

Come December 96, my dosages will most likely be on the down slide.

Conclusion: Jack has asked me to list anything unusual leading up to the emergence of WG symptoms. There does not seem to be anything unusual other than a 30 day sailing holiday in the Whitsundays under strong UV which we had back in September 95 - some 4 months prior to the appearance of WG symptoms.  Another suspect at this place is a beautiful beach known as Whitehaven Beach which has the best sand in the world. Note that this beach is of sand which is pure silica !

In the month before the WG symptoms, I spent a further two weeks sailing in the sun on the Gippsland Lakes. I mention this because I noted in the Lupus Support Group material on the Internet that strong UV was suspected in a number of their cases as a percursor to that disorder.

Sequel - May 2002

Despite all that happened back in the 'dark days' of  1996,  life has gone on and one has to carve out a new way of life taking into account the permanent damage inflicted by WG during its most active phase in 1996.

I have not got into full remission as yet. I have managed to get myself into some form of eqilibrium whereby WG is held at bay by essentially low doses of Imuran and Prednisone. My ANCA remains negative, but because my ESR rarely goes below 20, the physician dares not cease the drugs.

I have always had a bad back with spinal wear and tear, but I had an episode in August 2001 whereby I developed 'drop foot' in my left leg and chronic sciatic pain,  which was diagnosed as coming from pressure on the sciatic nerve as it exits the spine. I had a MRI then a  Laminectomy and Discectomy operation carried out by a Neuro Surgeon. At first it seemed that it had worked a miracle, but within a week I was back to where I had started with. Post op recovery did not seem to happen, and it was followed by about a further three months of severe pain and despair. Then a blood test revealed the usual WG markers had flared, and my physician suspected that I might have developed Mononeuritis Multiplex, so had me admitted to hospital for aggressive intravenous prednisolone infusion.  The neurologist however  had the opinion that it was not MN (presuming that had had seen plenty of it before and was not convinced the systems fitted the mould).

Then later  I commenced to get severe spasms in my left leg. The neurologist then commenced therapy using increasing doses of Epillin and its companion drugs which eventually brought the spasms under control in   February 2002. The neurologist then arranged for a prothesis to support my left ankle, due to the nerve damage rendering a significant loss of control of the left ankle.

A program of occupational therapy and time has seen a small measure of control come back to the lower leg.

As of May 2002, I have stabilised somewhat, but still have issues of arthritic pains, lack of energy to contend with and  I walk with a shuffle due to left leg nerve damage.