Has anyone had experience with Nitisinone 20mg Capsules for HT-1?
I've recently started taking Nitisinone 20mg Capsules to treat my HT-1. The doctor has given me a special diet to go along with it, but I'm curious to know if anyone else has any insight, experiences, or tips on managing this treatment. The side effects list is pretty long and scary, so I'd love to hear about other people's experiences with it— both good or bad.
Has anyone had experience with Nitisinone 20mg Capsules for HT-1?
I've recently started taking Nitisinone 20mg Capsules to treat my HT-1. The doctor has given me a special diet to go along with it, but I'm curious to know if anyone else has any insight, experiences, or tips on managing this treatment. The side effects list is pretty long and scary, so I'd love to hear about other people's experiences with it— both good or bad.
Comments (7)
Just a heads up, if you ever experience any signs of liver problems, go to the ER. Don't wait it out. This is serious stuff.
I wish there were more support groups for this. It's tough finding others who understand what you're going through.
I think it's important to mention that Nitisinone can be lifesaving, but it's not a cure. You'll need to stay on top of your condition and keep communicating with your healthcare team. Good luck!
I've been on it for a while now. For me, the side effects have been manageable. I've had some skin issues, but nothing too bad. Just stay on top of your blood tests and keep communicating with your doctor. You got this!
This is the right subreddit for you! We have a lot of people who take this drug. Welcome!
I have a friend who takes these and they've had a really good experience so far. No major side effects & their doctor seems to think it's been controlling their HT-1. Of course, everyone's different, but it's nice to hear that it's working for someone!
Good luck! Just make sure to avoid too much tyramine in your diet. (It's a very specific amino acid that can cause headaches and other issues). Also double-check that you do have HT-1. Your doctor will check if you have a mutation in the FAH gene.