Emrenee88
07-07-2013, 06:36 PM
Hi to all, Im Emily.
I was diagnosed in October 2007 after being told for 5 months that I just had a cold and my old GP told me there was nothing wrong with me, it was all in my head (he put it down to my mum having died). I had the severe and fast acting form. I had ulcers in my mouth and on my tongue, lesions in my lungs, my sinuses, ears and throat were affected as well as my kidneys, spleen and skin. I had lesions on my hands and legs. I was flown to Sydney in an air ambulance, where I had biopsies of an ulcer from my tongue, a lesion from my leg and from my nose to confirm the WG diagnoses. After being there for about a week and a half, I developed a fever (39.5degrees celcius) and very bad stomach pain and they discovered via ultrasound that my gall bladder had become inflamed and ruptured. They had not seen this happen due to WG before but thought that was what had caused it to happen.
I was started on a weekly infusion of cyclo and 1g pred IV for 8 weeks along with 50mg pred tablet form daily. After being in Sydney for 6 weeks they said I was well enough to go home and finish my cyclo there and when I saw my rheumatologist he told me that had I gone 2 or 3 more days, I would have had kidney failure and I would have died. I was only home for 2 weeks when I relapsed and was sent back to Sydney where they gave me mabthera and where I also spent my christmas. I had 2 treatments there and the other 2 when I was home. I went back onto the oral cyclo for 6 months then I relapsed again and was started on mycrophenalate (however you spell that). Another relapse in 2009 and had another 6 weeks IV cyclo and 8 months oral. Another relapse in 2010 and was started on Imuran which I have been on since and have been in remission since then (touch wood).
It was a very long hard road and I was very lucky to have survived, as Im sure a lot of us were. I am forever thankful for the few friends that stayed by side when most of the rest just away to hide and of course the support of my family. I still have good and bad days and now, despite being told that it wouldnt happen, I am going to have a baby. Hopefully I will stay well as I have so far (apart from colds and stuff). Hope I wasnt too boring or long winded and thanks for reading.
I was diagnosed in October 2007 after being told for 5 months that I just had a cold and my old GP told me there was nothing wrong with me, it was all in my head (he put it down to my mum having died). I had the severe and fast acting form. I had ulcers in my mouth and on my tongue, lesions in my lungs, my sinuses, ears and throat were affected as well as my kidneys, spleen and skin. I had lesions on my hands and legs. I was flown to Sydney in an air ambulance, where I had biopsies of an ulcer from my tongue, a lesion from my leg and from my nose to confirm the WG diagnoses. After being there for about a week and a half, I developed a fever (39.5degrees celcius) and very bad stomach pain and they discovered via ultrasound that my gall bladder had become inflamed and ruptured. They had not seen this happen due to WG before but thought that was what had caused it to happen.
I was started on a weekly infusion of cyclo and 1g pred IV for 8 weeks along with 50mg pred tablet form daily. After being in Sydney for 6 weeks they said I was well enough to go home and finish my cyclo there and when I saw my rheumatologist he told me that had I gone 2 or 3 more days, I would have had kidney failure and I would have died. I was only home for 2 weeks when I relapsed and was sent back to Sydney where they gave me mabthera and where I also spent my christmas. I had 2 treatments there and the other 2 when I was home. I went back onto the oral cyclo for 6 months then I relapsed again and was started on mycrophenalate (however you spell that). Another relapse in 2009 and had another 6 weeks IV cyclo and 8 months oral. Another relapse in 2010 and was started on Imuran which I have been on since and have been in remission since then (touch wood).
It was a very long hard road and I was very lucky to have survived, as Im sure a lot of us were. I am forever thankful for the few friends that stayed by side when most of the rest just away to hide and of course the support of my family. I still have good and bad days and now, despite being told that it wouldnt happen, I am going to have a baby. Hopefully I will stay well as I have so far (apart from colds and stuff). Hope I wasnt too boring or long winded and thanks for reading.