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my lupie story :)

759 Views 0 Replies 1 Participant Last post by  Fairy
I was diagnosed in September 2001; I was 19, and just about to start my second year at university. My symptoms started long before then, I was born with raynauds, and I’d always had odd rashes in response to too much sunlight. In my first year of uni the joint pains started, and so did the trips to and from the GP. Once the GP had ruled out lyme disease she seemed to give up on me – she got it into her head that I was depressed because I’d moved away from home (which was rubbish, apart from the joints being annoying I was having a great time!).

That summer I went on holiday with some friends, and although I didn’t go out of my way to sunbathe, I didn’t avoid it either, so obviously I went into a horrendous flare – excruciating pain, nausea, rashes etc etc. Somehow I made it through the holiday, and went back to my GP – a different one this time, but she was just as incompetent as the first, prescribed me some ibuprofen and basically told me to deal with it. Not being one to complain, I went away and tried to do just that, but I got worse and ended up being admitted to hospital with kidney problems.

Finally I met some decent doctors (who were astounded lupus hadn’t been picked up earlier – by this point my dsDNA was off the scale). I was put on plaq, methotrexate and steroids, and everything stabilised fairly quickly. I was fine for about four years, when I went into another flare – it was decided that the metho wasn’t enough, so they swapped it to cellcept. I loved that drug – I felt like an entirely normal human being, and got my steroids down to 5mg (the lowest I’ve ever managed). I was gutted when my white cell count started to drop; I had a bone marrow biopsy and found out the drug was to blame, we tried stopping and starting it at lower doses, but each time my white cell count would plummet, so eventually I had to stop taking it altogether.

I was off all immunosuppressants for about a year to let my bone marrow recover, but when my kidneys started to play up again it was decided I’d try azathioprine. I’m TPMT heterozygote, so I had to start on a low dose anyway, but this was gradually reduced further as my white cell count dropped again. In the end, I couldn’t take enough aza to control the symptoms, so I was given rituximab. I’ve had two rounds of rituximab now, and it hasn’t worked brilliantly well, possibly because I can’t take another immunosuppressant at the same time.

That’s where I am now – on plaq, steroids, and rituximab, and keeping my fingers very much crossed for a new drug to be approved…

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