WEGENERS GRANULOMATOSIS Posted By ANIL CHHAWCHHARIA Date : 23-Feb-09
I have been resently diagonosed with WEGENERS GRANULOMATOSIS and since this being a rare disease i am not able to find a specialist doctor in my city to discuss my case. Although i am very much grateful to my doctor who happens to be a Physician & Intensivist, he treated me to a miraculous escape from death, diagonsed me in time, gave best possible critical care and now i am continuing medication under his supervision. But still i needed to discuss my case with some doctor/hospital who has seen enough vasculitis patients closely and can give a conclusive idea about treatment and also if we are missing upon some more diagonistic tests or precautions. I would like to present a brief summary about my illness to you as under:- I was keeping unwell from last 2 months with general ill health, lethargy, weight loss, fever,cough/cold with occasional blood in sputum,high bilurubin, liver swelling etc and was being trated with antibiotics & antimalerial. I was admitted to the hospital with acute onset of respiratory distress and investigations revealed ANEMIA,BILATERAL WHITE LUNGS, HYPOXIA ON ABG, DISPROPORTIONATELY HIGH ESR. My Doctor suspected something wrong and sent blood samples for testing and C-ANCA tested positive(100). I was on mechanical ventilator for 5/6days and was treateded with Antibiotics & IV Solomedrol but only after being given ENDOXAN i showed immediate & significant improvement. The chest xray showed rapid resolution of nodular shadows could be weaned rapidly and subsequent inhospital course was uneventful. Now I am at home since last 20 days and feel to be improving day by day. I am taking Omnacortil20mg & Endoxan100mg, Thrrox200 daily. My TLC levels has reduced to nearlly from 29500 to 10000 cu mm,ESR from 90 to 35-40mm, Haemoglobin from 5.5 to 12.3gm. My reneal functions were near normal, Serem Creatinine was always normal, Blood Urea was high45-70mg/dl and occasional Protein traces in urine.Although no Casts or RBC's where found.My nasal biopsy done in hospital was negative. Sir, i know wish to ask if my current medication is sufficient/proper enough for treatment of my disease? With the above summary, if you could advice me if any more diagnostic tests should be conducted to verify the stage of disease or the extent of damage it may have done which is clinically not assesible? How is it possible for me and also for my doctor to keep update about the available medication/tests for treatment and monitoring of the disease?