My Biopsy 2 years ago said "zero" evidence of PBC. My labs though said I had PBC. I was put on URSO since 2016. Only thing elavated for 2 years has been my Alk-phos. It fluctuated between 157-187 approx. Then Sept./Oct. this year, I felt nauseous and URQP. Labs jumped including AST & ALT. Especially ALT. Last reading it was 117. Could be higher now. Also my ferritin is 192. Too much Iron in my liver. My PA knows nothing about why that is. And said not to change my diet. 😳 Yes, im done with her. I see my hepatologist soon. Thankfully i'll be covered by my insurance!! AND... Thank you to EVERYONE who advised me and enlightened me about the unreliability of biopsies and Ultrasounds in detecting early fibrosis.. or even later fibrosis!! Anyone newly diagnosed please listen to that advice.
4 Ultrasounds over a 2 year period stated "Perfect liver... Unremarkable liver... No change with patients liver... and again Unremarkable liver!
After feeling sick for 3 weeks, and labs rising I had that 4th ultrasound. That Unremarkable ultrasound. I pushed my PA to give me a referral to have an MRE. Again, thank you to everyone who suggested I have one. Just 2 weeks after my last Ultrasound..... Here is some information on MRE and my results:
According to Ehman, an MRE scan, based on the color-scale picture it projects, radiologists can instantaneously know whether the patient has a healthy or diseased liver. Liver tissue stiffness is measured in kiloPascals (kPa), with a normal liver having a stiffness of roughly 2 kPa, the same consistency projects inside body fat. Diseased livers range from 3 kPa to more than 10 kPa.
My results are 3.14 kPa. "Definitely fibrosis." I still have to discuss this with my hepatologist, but, I'd say I'm a non-responder to URSO. We will see where I go from here. Especially since my ferritin level is so high too. 😞 Maybe OCA? I'm not sure what other choice I have. ALSO... That 3.14 kPa isn't accurate. My ferritin (iron in my liver) is 192. Technician informed my doctor MRE cannot read fibrosis accurately when high levels of iron are present in the liver!!! Ugh!!! I will have to redo MRE once we figure out why my ferritin is so high and get that under control. Rollercoaster ride!!!
Feb. 7th 2019 update. My hepatologist said not to worry about ferritin interfering with my MRE results. So I'm not. Plus, I start Ocaliva tomorrow.