I was diagnosed in September 2010 when I was 48. I first went to my GP in August 2010 when I became swollen all over. In the beginning it was just my ankles then it spread to my thighs, genitals and basically all over. I was sent to hospital for a kidney biopsy and they kept me in for a week with pneumonia and multiple pulminary embolisms. This was a quite a shock because I didn't feel that bad at the time but looking back I was clearly pretty ill. Until this time I had enjoyed 48 years of healthy active life, sports etc.
When I was diagnosed I read the internet and read all sorts of doom and gloom reports....please ignore them. Trust your specialist.
The illness is an auto immune problem. Basically the immune system decides to fight the kidneys even though there is usually nothing wrong with the kidneys. Nobody knows why, but it seems to happen to men in their 40's. The illness thickens your blood, raises your blood pressure and increases your cholesterol.
I was prescribed warfarin to prevent blood clotting, various blood pressure medication, simvastatin to tackle the rising cholsterol and furosemide to reduce the swelling.
From September 2010 until July 2011 I felt quite unwell.........generally tired and often very cold, but I managed to get to work every day despite lots of gastric problems caused by the swelling and the furosemide. During the evenings I wasn't a bundle of fun but I hoped that my natural charisma would see me through....... It probably didn't.
In 30% of cases the illness goes away of its own accord (nobody knows why). In 70% of cases treatment becomes necessary.
My specialist decided to simply treat the side effects for 6 months and hope that it went away. After 6 months it hadn't gone away and therefore he decided to begin treating the actual illness itself in March 2011. The treatment he prescribed was tacrolimus which is an immune suppressant.
I began to feel better in July 2011 and now I feel A1. I have a meeting arranged with my specialist next month and I am hoping that he may be able to classify me as being officially in remission.
My advice......establish a good relationship with your GP and your specialist. Try and stay positive (although not often easy). I hope that this helps..