Primary Sclerosing Cholangitis (PSC)

Posted by jacinta @jacinta, Aug 21, 2017

I'm told I need to have a partial liver transplant. I do have a Donor. My question is: should I get a second opinion ? I have an appointment with Mayo Clinic. I heard that they are the best.

I'd love to hear from people that had the partial liver transplant. Are you glad that you had it done? And are you getting a better quality of life.

Jacinta

Interested in more discussions like this? Go to the Transplants Support Group.

Rosemary, Volunteer Mentor | @rosemarya | Jun 7 6:38am

In reply to @sisle "I have tried a whole lot of meds, and ended up with the miracle worker Rifampicin...." + (show)

Hi, @sisle. I am happy to welcome you to Mayo Connect. When I was first diagnosed with PSC, I did not have any outward symptoms, but as the disease progressed, I did have serious itching, along with other symptoms. I received a transplant (liver and kidney) in 2009 as a result of my PSC progression to liver failure and kidney failure.

I'm one of the patients who used a lot anti itch lotions. I was not familiar with Rifampin, so I did look it up and found this information on the website for PSC Partners Seeking a Cure .
"Rifampin is an antibiotic mostly used for the treatment of tuberculosis...it has also been shown to help relieve pruritus (itching). ..may cause changes in other medications you are taking....Make sure your doctor is aware of all other medications you are taking... in order to avoid any possible conflicts..."
I would like to share the link for those who might not be familiar with it.
- PSC Partners Seeking a Cure
pscpartners.org/

@sisle. Thanks for sharing! How long have you been taking Rifampin? Do you have PSC that is causing your itching?

edwardlwallace | @edwardlwallace | Jun 8 9:42am

I was taking Ursodiol for the itching and it helped a lot

sisle | @sisle | Jun 10 6:35am

In reply to @rosemarya "Hi, @sisle. I am happy to welcome you to Mayo Connect. When I was first diagnosed..." + (show)

Hi from Norway!
I was diagnosed with PSC in 2022, and the severe itching has been my only problem. I have tried Atarax (hydroksyzin) which made me too sleepy and did not help, Questran (cholestyramine) which had a lot of side effects like nausea and obstipation. Bezalip Retard (bezafibrate) had side effects like nausea and loss of appetite and at last Ursofalk (Ursodeoksychol acid). None of these gave me any help with the extensive itch and the following sleep deprivation.
I have now been using Rimactan (Rifampicin) for over 3 months, and it had effect at once, and I am itch-free! I am using the 150mg capsules once a day, but if necessary I can double the dose and more. There can be a lot of side effects like bonemarrow depression, so the follow up from the liver department at the hospital is necessary.
Rifampicin is usually taken for resistent tubercolosis, leprosy and legionella, so it's very potent. That is why they use it as a last resort.

I hope this can be of help! Your request ended in my spamfilter, so I am sorry for the late response!