memory loss and cyclosporin
Hi, I have memory loss with desferioxamine pump, the one given to chelate the iron, this gives you wee the colour of irn bru (orange) and can cause something called P.E.R.S. This is to do with water on the brain and you are supposed to watch out for seizures and blurred vision and headaches at the back of your head. I am in UK and I have to get my vision tested every four months because of this. Is your husband on an iron chelator cos this rather than ciclo could be the culprit. How often does he get blood transfusions, cos that can also be a factor. You should mention coloured urine etc to your doctor cos these things seem transient but can reflect a condition which could be moving to a serious stage. Incidentally if anyone tells you what they can do about it other than take your off the iron chelator please post cos they don't seem to have a clue over here in UK. I can be talking to someone and forget the conversation as I am saying it and I am 59, have blamed menopause and everything else but it seems to be the chelator.
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Diagnosed SAA Sept 2010, trisomy 15, small pnh clone. Txs every 4-6 weeks, on ciclosporin, ATG failed November 2010. No repeat as although very tired have otherwise stayed well.
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