I was originally put on 100mg a few months after my diagnosis, on this dose I felt sick and lost my appetite a bit, and thats when they tested for TPMT. Then they put me onto 50mg and this was fine. I had my blood tests
regularly and I think it was white blood counts that kept going up and down.
Then almost two years ago now (on my 19th birthday!) They said I would have to come off it until my blood test results returned to normal. I think at this point some of the liver results came back not right as well, but I was also having an allergic reaction to another medication so I don't know if that was connected.
I then had blood tests every week for 7 weeks until they returned to normal and they put me back onto 10mg of Aza. (I cant remember how often my blood tests were at this point but they were carefully monitored) The dose has since then been very slowly increased by 10mg at a time!
I think I have been on 40mg since around August time? I am supposed to have my blood tests every two weeks but It doesn't always work out that way!
I don't think they are planning to get it up to 50mg again, I assume they think that this will be too much.
I think its all a bit stupid to be honest! I think they are just putting off trying a new drug but as in the last week I have had an abscess
drained and they have found fistulas I'm guessing we will have to find something else soon!