Chemotherapy and auto immune diseases

Was just commenting on a post in the Vasculitis UK Facebook group today, and reminded of the devastating daily nausea I had for years from Azathioprine. I started taking this drug in 1998 to control my life threatening neurological auto immune disease cerebral vasculitis. Basically the drug controlled the inflammation in the blood vessels in my brain, and kept me alive. Azathioprine is a very old chemotherapy drug, though not just used for cancer, but also auto immune diseases like mine. It’s quite mild, but it can cause the horrible side effects. I would feel sick within 90 minutes of taking the pills, and it lasted for up to 8 hours a day. Every day, for most of a decade. That’s what I lived with from 1998 onwards. Every single day. For some people the sickness goes away. Not me. I stuck with it because I suspected – rightly as it turned out – that all the cytotoxic drugs (including the main alternative drugs I could be switched to, and ended up trying later anyway) would make me hurl. Eventually, after another drug had been added to the mix in 2006, and I said I just can’t cope with this sickness from both, the medics put me on twice daily anti nausea drugs for life. That transformed my life. I wish I’d been on them sooner. Years later I had high dose chemotherapy infusions in hospital, which made me even sicker. But they only lasted a few months. Azathioprine went on for years. So yup, chemo and auto immune disease can be a stinker. And not just the obvious high dose infusions.

P.S. A point that I should add is that auto immune chemo patients don’t get the same support that cancer chemo patients do. We’re not given the same anti nausea drugs. Also no similar arrangements re free hospital parking for infusion days. But it can be just as tough. And a treatment that can go on for vastly longer.