Help lab, health and biopsy overlapping,
Dear all in 2013 I was diagnosed PBC based on positive AMA (possibly overlap with scleroderma and/others, last not confirmed through serology and several biopsies.)
On Ursofalk since December 2013, December 2014 Alat,Asat, ggt improved, phosphates stayed equally high: 190
2 other tests in 2014: AMA negative
January 2014: Gastroenterologist decided to take me off urso to do biopsy after three months when liver is inflamed. All values went up again. Liver biopsy March 2015 leucocytes and tiny shunts, yet no clear PBC or PSC.
Gastroenterologist decided to keep me off Urso to see if liver stabilizes or gets worse. Now June suddenly all lab values exploded, ggt 277, phospatase 241, Alat 200, Asat 121 worse than before 2013 when I did not have Urso yet. And triple from being on Urso. And it took the Urso a year to work!
Gastroenterologist is thinking of doing a second biopsy. What do you think? And until then no Ursofalk. Might take another two month until I get an appointment for a liver biopsy.
Getting worried here. Besides being sick like hell again. Seems they are forgetting there is a person attached to that liver ;-)?
Also do any of you recognize below symptoms from within PBC? They cannot make anything if this except one rheumatologist who says autoimmune overlap syndrome negative for antibodies. So no treatment for these symptoms.
And what do you think about biopsy and AMA negative liver issues responding well to Urso?
I so want my Urso back, grmble
Health issues: exhaustion (duuh heavy liver inflammation), radiating pain in joints and muscles, blurred vision, big belly mainly evening, cannot sit for to long, skin rashes, periods of infection in several nerves aka loss of sensibility and stability in one leg, dry eyes, nose, mouth), recurrent eye infections and ear infection since teen, aphtes in mouth, tongue, intimate region and since 2014 a growing indent on my skull with periods of inflammation. A specific white matter lesions already diagnosed 10 years ago. Had lip biopsy, scalp biopsy, quadriceps muscle biopsy and all blood tests including lumbar puncture (behaves like MS is not MS), once Ana slightly elevated once Ena slightly elevated all differentiated blood tests negative. All biopsies showing inflammation with leisured but not enough to diagnose for Sjogren, scleroderma or any muscle disease.
Thank you all for your attention and exude the length of this posting