Personal Experience with Taking Nitisinone
Written by AKU Society UK, published 9 months ago.
The AKU Society have been collecting stories from other AKU patients on Nitisinone - some are taking it off-label, whereas others were given it as a part of a clinical trial to see if it is an effective treatment. This is one of those stories, to read more, download them here. We still need to know more about Nitisinone, so if there are any patients who are taking it regularly, please contact us to discuss your experiences.
"I’m in my late forties and I’m one of the few people who have been taking Nitisinone off label, for over 2 years now. Originally I started on a 1mg per day dose, but due to supply issues the dose was increased to the more readily available 2 mg capsule. While on the 1mg/day dose, the HGA in my urine was below the detectable limits of the analytical technique used (NMR). No measurements of plasma tyrosine were taken. Being a substantial man, I weigh approximately 100kg, the effective dose I was taking at this time was 0.01mg/kg/day, which equates to 1% of the dose taken by an HT-1 patient.
I have not noticed any adverse effects from taking Nitisinone. My view is that because of the existing damage to my joints, Nitisinone will not help to combat the existing damage, but it will still help by either preventing or slowing down the rate at which further damage may occur. For example, at present I do not appear to have any of the complications associated with cardiac valves. Taking Nitisinone now will hopefully prevent complications in the future. I will have to live with the existing damage to my joints, and the increased wear and tear the existing damage will cause to these joints."
Dr. Ducan Batty, AKU Society UK volunteer, details what using Nitisone off label means and how he think it has helped. Please download his report here.
Written by AKU Society UK, published 9 months ago.
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