urso non responder: hi , does anyone know the... - PBC Foundation

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urso non responder

Samanthaann profile image
7 Replies

hi , does anyone know the criteria of being a non responder? Does the number have to be elevated by a certain amount for a period of time. What would the number have to be elevated to? Im having trouble trying to find details. Thanks for any information.

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Samanthaann profile image
Samanthaann
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Flid profile image
Flid

according to a mayo clinic report dated 2013;

“Responders were defined by reduction in alkaline phosphatase to less than or equal to 1.67 times the upper normal limit by 2 years of treatment, whereas non-responders had alkaline phosphatase values greater than 1.67 times the upper normal limit.”

I don’t know if that’s helpful.

Samanthaann profile image
Samanthaann in reply to Flid

Yes thank you so much

Rozzie52 profile image
Rozzie52

I was a partial ursodeoxycholic responder , there are some many medications now I am on Octilva as well as ursodeoxycholic, enzymes went down to normal range mine were 1300 now down to 100 . I hope this helps. Take care

Samanthaann profile image
Samanthaann in reply to Rozzie52

Thank you

gillrich profile image
gillrich

Get In touch with the pbc foundation Pbcfoundation.org.uk for all accurate and up to date information

NotorDJP profile image
NotorDJP

I've been in the 300s for several years and was never much below 200. Mine has started to slowly rise so I don't know if I am stopping to respond or its my current stress and eating habits. I do know that I am having more pain than I have had in awhile. I'm not sure I fit in the mayo guidelines, but I have been doing well on it. I'm hoping maybe we can try something else if mine keeps rising

Samanthaann profile image
Samanthaann

Thank you for replying.

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