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I was diagnosed with WG 4 years ago after suffering a catalogue of symtoms 9 months. My employer the DWP ( there's a joke ) even threatened to sack me after their occupational health doctor said there was nothing wrong with me. I was finally admitted to hospital coughing up blood and showing signs of kidney failure. After a broncoscopy revealed the cause I was put on ( as quoted by one consultant ) industrial levels of medication. 10 months on cyclophosomide and prednisolone followed by azathioprine and prednisolone pushed the WG into remission but caused hair loss, massive bruising, easy bleeding on the slightest knock, huge weight gain, moon face, a lump below my neck termed a buffalo hump and waves of crashing exhaustion. I am now showing sub-clinical hypothyroidism and pre-diabetes as afurther long term effect of the steroid
I fully appreciate that I am lucky to still be here but more feedback from the doctors would be welcome. Adults get WG and as such are old enough to be given the full picture.
My GPs were unable to connect the dots and form a diagnosis and even the consultant seems to be flying by the seat of his pants. Not everyone has a positive ANCA test.
We all know that lack of treatment will be fatal but I think fore-warned is fore-armed and would stop sufferers panicing at the next new symptom.
WG and the side effects of meds is survivable so I hope any info I've provided will be a little reassurance to anyone newly diagnosed.
Good luck to you all
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