Hi everyone,
I've just discovered this forum – what a fantastic site! I can't believe I didn't come across it sooner.
My story is similar to a lot of yours. I was diagnosed with Wegener's in 2005 when I was 23 years old. I'd had joint pain, anaemia and swelling of my left leg for several months before disease eventually hit my kidneys. I developed rapidly progressive glomerulonephritis along with retroperitoneal fibrosis and was rushed into hospital. They treated me with dialysis and plasma exchange 3 x weekly and a hefty dose of cyclophosphamide and prednisolone, and I achieved remission after about a month. Since then I have remained in remission without the need for dialysis. I was on mycophenolate mofetil up until about a year ago when I asked to switch to azathioprine. I now take 75mg azathioprine and 5mg prednisolone a day.
I'm 31 years old now and 21 weeks into my first pregnancy. Everything was going well until mid last week when my left leg started swelling again and I've since had really bad joint pains. I've not had a flare up of the illness since the initial diagnosis, but these symptoms feel very reminiscent of the original symptoms I had in 2005. Blood tests showing all normal values so far, and kidney function is good, but they didn't check for ANCA until today (waiting for results now – should know in a couple of days – got fingers firmly crossed).
There's not a huge amount of literature available about pregnancy and Wegener's – and the little that does exist is not hugely encouraging. I'd love to hear some stories from other people who've been pregnant or who know someone who has. I'm finding it all quite terrifying, to be honest!
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