My daughter is 12 and she has Pfic 3 ... she has liver cirrhosis but still her own liver works. She uses Ursofalk every day since 10,5 years now. I hope she will stand it all her live without using a new liver .... she is my Baby, Princess, Lovely - one .... 💖
My baby girl is 8 years old and has PFIC 2. She takes rhifampin ursidol and 3 other medicines that are working well and we are about to take a new trial run of a new medication soon that has no negative side affect and pray it helps the itching
@@lalaland1710I have type 1 PFIC, and I also take 300 MG of ursodial and 150 MG of rifampin. Although you should never diagnose yourself with a specific type of medication, rifampin may help - I would take with a specialist and look into it.
Although I understand why you say this, as someone with the disorder it is devastating and scary and awful. In my opinion, it should be described as such due to the horrible nature of the disease.
My daughter is 12 and she has Pfic 3 ... she has liver cirrhosis but still her own liver works. She uses Ursofalk every day since 10,5 years now. I hope she will stand it all her live without using a new liver .... she is my Baby, Princess, Lovely - one .... 💖
Mine too he is 17
My baby girl is 8 years old and has PFIC 2. She takes rhifampin ursidol and 3 other medicines that are working well and we are about to take a new trial run of a new medication soon that has no negative side affect and pray it helps the itching
@@ewasa7061 Hey, I have type 1 pfic my name is dennis,I can help you out just let me know and I will try my best
@@ewasa7061 no i do not i take rifampin and ursodial i also take hydroxizine for the itchyness
@@ewasa7061 if she has a fever,and is not feeling good to her side or her liver take her to the hospital.
Hi IAM brick patient my medicine is sem
My prayers
I have A Rare PFIc Liver Disease Ask Me Anything I Take 300mg of ursodial and i do take rifampin
CheckRare NP
How can you manage itching and school work plz my son is 17 his type is 3 same medication but no rifampin
@@lalaland1710I have type 1 PFIC, and I also take 300 MG of ursodial and 150 MG of rifampin. Although you should never diagnose yourself with a specific type of medication, rifampin may help - I would take with a specialist and look into it.
Stop using horrible, scary devastating it herts us as patients parents
Although I understand why you say this, as someone with the disorder it is devastating and scary and awful. In my opinion, it should be described as such due to the horrible nature of the disease.