Hello everyone,
A couple of weeks ago, I was told by my haematologist to stop Exjade (which I had been on for over two years now) as he noticed that my creatinine levels have been going up at a gradual rate from 88 in September to 108 at the beginning of November. He believes that maybe it was because I wasn't drinking enough, how much do you need to drink during a day? I feel I drink enough liquid during the day probably around 2 litres.
Luckily, the creatinine levels have not stabilised and I have been given the all clear to go back onto Exjade but at a reduced rate from 625mg to 500mg which could be at the expense of my ferritin level which the last check was hovering around 700.
However, I have now been told that blood in the urine has been spotted on a number of occasions and I will need to undergo a scan to clarify what exactly might be going on. Has anybody had this problem with exjade i.e. blood in the urine and had to eventually stop altogether. Added to this, months before I started the exjade an MRI scan detected a cyst on one of my kidneys and I was told at a ultrasound scan months later that there was nothing to worry about - its age.
I am now wondering if something might have been missed or am I beginning to show signs of paranoia!!!! The last thing I want is to go back on to desferel - I was on that for over 25 years!
Sorry about the long message, but there are those of you out there who now more than the doctors themselves. hehe.
Kind regards,
Nick