I’ve had Chung Strauss for about 5 years now and for most of that time I’ve been on aziathioprine. I did flare around three years ago and my consultant thought it was because I lowered my dose of aziathioprine and steroids too quickly.
I’ve been steroid free for at least nine months now and I take low doses of hydrocortisone as tests showed my adrenal glands were not working as well as they should.
I am under the care of my local rheumatologist at Airedale hospital but also the team at Manchester royal who I see once a year as they see more vasculitits patients and are more of a specialist Centre.
Two weeks I saw a consultant dr mccarthy at Manchester who ran a test to see how much aziathioprine I had in my system. His nurse rang me up the following week and told me to come off it straight away for a week and then go on it at 100mg instead of 150mg as the dose had showed up too high and it could damage my liver. I’ve done as they advised but I’m a bit concerned as my regular consultant had advised me to only come down to 125mg in the spring as she said it must be gradual. They don’t seem to run the same tests at Airedale hospital.
Manchester has asked me to go back in a month to have my levels checked again with a blood test. I asked the nurse at Airedale whether the blood test could be carried out there and was told she wasn’t sure if they ran the test, it all came down to money and I’d be better going back to Manchester to make sure they were accurate.
I just wondered if anyone else had these tests, which don’t seem to be regular tests, to determine the level of aziathioprine in your body? And are they just carried out at specialist centres without the possibility to liaise between hospitals? And has anyone been told they have too much aziathioprine in their system and been told to reduce immediately? Thank you
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