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Primary Sclerosing Cholangitis (PSC)

Transplants | Last Active: Jun 10 6:35am | Replies (93)

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@colleenyoung

Hi @sandyjr and @silverwoman, it's been a while so I wanted to check in. Would love to get an update. How are you?

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Replies to "Hi @sandyjr and @silverwoman, it's been a while so I wanted to check in. Would love..."

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?