New member - just asking some questions :)

Hi everyone! My name is natasha and I was diagnosed last summer with UC and of course PSC. It’s been interesting to say the least. I’m really struggling with the itching. It seems like the cholestrymine (or however you spell it lol) doesn’t help. Also I was just curious on how fast everyone else’s illness progressed because that worries me sometimes too. It would be great to hear from you guys! :slight_smile:


I was diagnosed in April 2013 with moderate to severe psc. But during my fight with uc, I had an mrcp in 2006 that showed no liver problems. So it went that far in 8 years. My meld scores have ranged from 6 to 12, but my main symptoms are fatigue with occasional itching.

So this has been a very slow process and takes while to get mentally adjusted to.

My UC is very mild. I don’t have too many issues with it. I went to my primary doctor an told him I was tired a lot and I was itching pretty bad. So he decided to run some liver tests and after all those tests the diagnosed me with PSC and with the ERCP they found the UC. It all happened fast and out of the blue.

And thanks Jeffdc for replying!


Hi. I have had PSC for 3-1/2 years. My doctor controls my itching with a medication called Rifampin. I take 300 MG two times a day. It has been a life-saver for me. You might ask your hepatologist about that medication. I also take 600 MG of Ursodiol two times a day which helps thin the bile to allow it to flow better through your damaged bile ducts.

I have had two ERCP procedures which were no fun at all, but did provide some relief for a time. I wish you well in this journey. Just keep living life to its fullest. You will have days you don't feel well but just keep pressing on. I would encourage you to limit your intake of very fatty foods. I used to have eggs every morning for breakfast for years but my digestion has been in such a messed up state this past year that my doctor recommended cutting back to one or two times a week which has helped immensely. You will learn what you can eat and what you cannot. My doctor though has really never given me any special diet. Smells have been a really torture for me in getting nausea with PSC. There are times when my wife cooks certain foods that I used to love that I really become nauseated. It can be discouraging to her so I have tried to be understanding and she has been such a helpmeet and support through these difficult days.

I would encourage you also to not just bottle all this up inside you. You should not view this disease as a death sentence. It has really helped me to share this disease with family and friends. I have so many praying for me on a regular basis. Well, I will close for now.

Best Wishes,

Mark in North Carolina

Hi Natasha
Regarding your Itching there was one medicine that I used prior to my transplant in 2010 when all else failed the doctor prescribed me Marinol which helped for awhile It does have some side effects such as dizzy drowsy etc but it did give me some rest for awhile Another one is
neontin. You might try this before the Marinol. I understand how debilitating this itching can be. I wish you success in finding a medicine that will give you some relief
Best of luck
Catherine in California