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Primary Sclerosing Cholangitis (PSC)
Transplants | Last Active: Jun 10 6:35am | Replies (93)Comment receiving replies
Hi Colleen. My daughter has started taking infusions of entyvio. She has been having stomach aches which are especially noticeable in the night. She stopped taking the ursodiol and has had some relief. She had her first infusion this past Wednesday. She sees her Dr on Monday, so hopefully they can get to the issue of the constant stomach ache. On your sight, I think I saw something about communicating with Mayo doctors. We live in NJ, so being that her PSC diagnosis is relatively new and in it's early stages, I do not think the doctors out there would consider her sick enough to see in person. Her doctor is not a specialist in the illness, but is far better than the specialist she was seeing who could not seem to get approval from her insurance company for the tests needed for diagnosis and the new doctor has been able to with no problem...what the heck? He wants to continue as her doctor and is very willing to communicate with the doctors at Mayo about her. Is this possible and if so, how is it done?
Replies to "Hi Colleen. My daughter has started taking infusions of entyvio. She has been having stomach aches..."
Hi @sandyjr,
I came across this post about your daughter and thought you might be interested in viewing this video where Mayo Clinic gastroenterologist, Dr. Mark Topazian talks about IgG4-related sclerosing cholangitis or IgG4-associated cholangitis – especially since they mimic primary sclerosing cholangitis.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/rituximab-maintenance-therapy-for-autoimmune-pancreatitis/
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@sandyjr, I am a PSCer who has had a transplant. I do not know the answer to your question to Colleen about communication with doctors at Mayo for PSC, but I will share my own experience with you.
I live in central Kentucky. My PCP first noted that I had elevated liver function in my routne labs. He sent me to our local gastroenterologist (GI who had some experience and knowledge of liver disease, and who also had professional relationship and connections with the liver specialists at both of the regional Liver transplant centers (Univ of Kentucky and Univ of Louisville). In collaboration with one of his hepatologist buddies he was able to diagnose and monitor my PSC. I credit him with being a major influence in me being alive today. He referred me to the liver transplant department at the Univ of KY (most convenient location - 45 minute drive) when I was ready for that step. I received excellent care there. And I would have transplanted there except that situation got suddenly complicated. It was my UK team who referred me to Mayo for treatment and eventual transplant.
I want to add that I did not have Crohns. I took URSO and it didnt cause me any issues.
Strength to your daughter. I think she has found a good proactive doctor!