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Date Posted: 20:03:21 08/19/07 Sun
Author: Vancomycin
Subject: Re: porphyria
In reply to: TIN 's message, "porphyria" on 18:09:23 08/17/07 Fri

你好﹐其實porphyria係比較罕見病。你所提及LFT有cholestatic picture...尤其係gamma GT (11月底顯著增加﹐但隨之下降)。顯示肝膽系統出現阻塞(最大機會係膽石﹐但寄生蟲/autoimmune hepatitis都可以)。你既肝功能慢慢恢復中。

至於係唔係porphyria...要問專科先知了。因為此病甚為罕見(紅血球生成中的某幾個steps出問題令porphyrin累積)﹐一般醫生好少好少機會會遇到。我只能夠話﹐需要肝膽科､血液科､皮膚科等專科綜合意見先可以推論。因為要從糞便+尿液中檢驗出uroporphyrin去confirm diagnosis。

比較常見的一種porphyria係PCT(porphyria cutanea tarda)...皮膚接觸到光會偶有水泡形成。確診亦為驗尿中porphyrin level...通常PCT會伴隨肝病同其他新陳代謝疾病但亦可以單一出現。

而家最主要係要分開到底你淨係有porphyria定有underlying hepatic pathology...呢方面醫生會同你講過。如果有其他肝病需要醫治就切勿延醫。因為porphyria本身除了身體不適外(主要為不能解釋肚痛､神經問題､高血壓､精神方面問題如憂鬱症等)﹐本身porphyria唔會致命。要留意飲食(盡量食高碳水化合物食物)﹐避免煙酒同生活失調﹐避免能誘發porphyria藥物(好難講邊種﹐不過試試記底每次病發前飲食/藥物如何如何-->避免)

希望你能提供多D資料﹐如ultrasound/CT/MRI report同埋唔知有冇驗過autoantibody...因為有時autoimmune disease個presentation會似hepatits或者porphyria. 如果你有的話可否打埋出o黎?

祝福你 + 等待你回覆

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