Primary sclerosing cholangitis is very serious. We have a friend that needs to know the best doctor and treatment available. So far the reports are gloom and doom. Please advise!
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Hi Anon
Thank you for your post!
In addition to Missie's great information, there are places you can contact that are actively studying this condition or are looking for participants. Unfortunately there are no cures or successful treatments right now for PSC.
One organization that may be able to help your friend is the STOPSC Study Group: you can find them here: https://web.emmes.com/study/psc/index.html
They have a comprehensive list of PSC studies/participants and the doctors and hospitals involved
Before entering into any study program, he will need to contact his doctor first. Because there are no successful treatments as yet, you may be a kind of "guinea pig" in terms of studies, but all participants in any kind of study are too.
Your friend may also need to consider liver transplant if he is not already in a list.
The Mayo Clinic (among others) are conducting clinical trials. Where is your friend living and is he able to move in order to get treatment?
Click here for Mayo Clinic studies for this condition: http://www.mayoclinic.org/primary-sclerosing-cholangitis/clintrials.html
Your friends doctor should also have a list of clinical trials that are beginning or ongoing. Depending on his current condition, your friend may qualify and get started on treatments as soon as possible.
I hope this information helps you and please stay in touch with us,
Best,
~Susan
February 20, 2012 - 12:46pmThis Comment
Hi Anonymous,
PSC is a disease that damages and blocks bile ducts inside and outside the liver.
Here is some links for additional information.
National Institute of Health
http://digestive.niddk.nih.gov/ddiseases/pubs/primarysclerosingcholangitis/.
Mayo Clinic
http://www.mayoclinic.com/health/primary-sclerosing-cholangitis/DS00918.
Medicine Net
http://www.medicinenet.com/primary_sclerosing_cholangitis/article.htm.
I hope this information helps.
February 18, 2012 - 10:18amMissie