My brother suffers from alkaptonuria. I noticed that there are others on this site who have experience with alkaptonuria, and I wanted to ask you all a question about this. The doctors want to start my brother on a nitisinone treatment soon, and I was hoping there are other people who have gone through this before and who are willing to share their experiences?
Hi. I'm from the AKU Society, a UK based organisation supporting AKU patients. (Check out our website at www.alkaptonuria.info) We recommend that Nitisinone will be the future cure for AKU. I must say that it is still not proven for use in AKU. However we know it is safe, as Nitisinone is used to treat patients with another disease, tyrosinaemia type I.
At the moment, we are starting a clinical trial with the University of Liverpool to prove the effectiveness of Nitisinone in AKU. If you want to know more about the drug, have a look at http://en.wikipedia.org/wiki/Nitisinone and please get in touch with us at ***this post is edited by moderator *** *** private e-mails not allowed **
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At the moment, we are starting a clinical trial with the University of Liverpool to prove the effectiveness of Nitisinone in AKU. If you want to know more about the drug, have a look at http://en.wikipedia.org/wiki/Nitisinone and please get in touch with us at ***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use