Regression of Varices

[Shon1234]

Hi all,

Following up on my mom's condition, she was diagnosed with PBC resulting in Cirrhosis two years ago.

She was diagnosed quite late when there was already synthetic dysfunction and peripheral edema.

Before treatment started she underwent endoscopy which revealed stage 1 esophageal varices. She started Urso a year ago, and her ALP and GGT decreased to the normal range, INR became standard, but her albumin is still mildly low. Currently, her edema is mild and controlled under diuretics

She underwent an endoscopy a few weeks ago, and her doctor confirmed that she no longer has esophageal varcies.

Does this regression of varcies confirm an improvement in the liver condition/ portal hypertension? can Urso improve albumin as well?

Can you still be considered compensated when you have mild peripheral edema? this area is quiet grey and the internet is a very dark place to seek for information.

Thank you,

[gillrich]

Lots of worries here. Please join the pbc foundation for all up to date and accurate advice it is a free to join although donations readily accepted as it is a charity a charity like no other as I hope you will come to realise Pbcfoundation.org.uk once you make contact you will become part of a beautiful supportive family xx wishing you well x

[Shon1234 in reply to gillrich]

Thank you

[kalyhan]

Hi Shon1234

I have confirmed autoimmune liver disease. Liver biopsy was done several years back. Esophageal varicies- I nearly bled out on first episode. After a 5 Pt blood transfusion, that brought my hemoglobin up to 6.7. I was really that low and wasn’t aware I was bleeding. My understanding of Urso is it SLOWS the progression of the liver damage, which can help other areas. Medical journals state that if they find varicies, the chances are higher that the patient will get them again. I’ve had 3-4 active bleeds that I’ve gone to the ER for. Three of those episodes ended with blood transfusions. I have an endoscope every couple months and I have yet to wake from the procedure with no new bands. The first time I was told about the varicies was about three years ago even though I was diagnosed with liver disease a few years prior to that. If you check the top medical websites like Merck, Mayo Clinic (here in the US, you may have others in your country), you should find info on repeat varicies. If your mom has had one, her chances are greater than other PBC cases of developing more, so she will need to quickly learn to recognize blood loss in her body. For me and the bleeding I’ve encountered - I can easily tell that I’m low on blood. It’s not difficult to remember the first time when I nearly bled out. I was going into shock and couldn’t tell the hospital my birthday for medical records. Hearing of your mom’s regression of varicies is great news, but she will need to be monitored for life for other varicies. Urso does not necessarily improve the liver condition/portal hypertension, from what I’ve been told by doctors, it only slows the progression of the liver disease, buying a few extra years before a transplant is needed (severe cases). Not everyone will need a transplant. I’d like to give a shout out to all blood donors in the world. I use to be one, thinking most donated blood goes to war zones or natural disaster areas…never realizing I would need transfusions to save my life a few times.

Good luck on your mom’s numbers - hopefully they become as normal as possible. I must add this funny note - it was my cat that told me something was wrong when I nearly bled out. Doctors think he may have smelled the blood coming from the esophageal varicies. He would constantly touch my mouth and eye lids (when I was sleeping). He had never exhibited this behavior in his 7 years.

[Shon1234 in reply to kalyhan]

Hi Kalyhan,

Thank you so much for sharing your story. I hope you are now feeling better.

I guess my questions are just an ongoing phase that I have with my moms condition, it quite makes me anxious. In 2022 there is an increasing evidence of cirrhosis reversal of all kind of etiologies (viral, alcoholic, AIH) tho PBC is the only one who stays a bit grey and controversial. Some doctors will say UDCA only slow progression the other will say it can contribute to some degree of cirrhosis regression. 2 years ago I didn’t even knew what cirrhosis or PBC is, that’s really crazy. I guess people nowadays with cirrhosis just seeking to know that medical treatment can make this End Stage disease not so “end”, basically just seeking hope.

[kalyhan in reply to Shon1234]

My doctors tell me that Urso is still the best treatment when I asked about other medications, but who knows? Maybe he’s not very good. I have not been to another liver specialist to find out, though hope to. My worry is the other issues that come along with it PBC - the threat of varicies, the chemicals a liver can no longer filter out go to your brain and actually make the person “dumb”. Of course they give me a RX for that, plus reducing my already low heart rate so I don’t bleed out as quickly, the hundreds of scars on my feet, legs and arms from the excessive itching and scratching. I take a lot of meds to treat the side effects of autoimmune liver disease and for me, that’s almost the worst part. As long as doctors continue to monitor your mom’s labs and such, on a regular basis - like every few months, she should be just fine. Don’t stress over it. As long as the numbers look good, she’s ok. When they’re not, don’t be afraid to ask her doctor - what are they going to do about it?

[kalyhan]

also, I too knew nothing when first diagnosed. I went to the hospital due to complications of my already diagnosed autoimmune pancreatitis. As soon as labs came back, they said it’s not the pancreas this time, it’s the liver. The fun part? Coming up with a proper diet plan that’s easy on the pancreas but also ok for the liver. I gave up trying to put one together as it was getting too complicated.