A son trying to help my mother live longer.

[Rimeru]

I'm new here to this forum, lived with my mother all of my life, I'm 25 and seeing her being diagnosed with semi-late stage cirrhosis of the liver due to pbc really took a toll on me. Not because I understand what this means for her but also for the fact that my mother herself, not much of an English speaker doesn't understand the severity and the outlook of this disease, with a father that also doesn't understand what she has and does nothing to support her or try to understand what she has. I also have two older brothers in their 30s, its complicated but they too live in the same household and I am the only one that has gone to all her appointments, done the research, and finally got her diagnosed as it was a bit in the late stages due to bad doctors and lots of stalling on their part. She has been on Urisidol for almost a year now and her levels are still very high. Doctors at the UC are running out of options. The last option I believe is Obetacolic acid but she already has itchiness which is a side effect of that new medication and I heard people died from misdosage which scares me, heard its expensive too. I know I'll be shot down for this but I want to look at other ways in lowering her levels, supplements/vitamins/ whatever of course with research, working or not we have to try right? My mother herself, I have to remind her that sugar is bad for the liver, and that she should eat more vegetables and drink more water. I forget to mention shes only 56. I do research all day non-stop in hopes of finding some ways to help. I hope this community here can relate to my story.

[Jennyhadenough]

I’m sorry pbc can be tuff. It’s great that your mom has you. Do you know if she was tested for autoimmune hepatitis as well. Or maybe another over lap autoimmune disease. My dr said that we have to keep our immune system suppressed.

Do i you know what her liver enzymes are

[Rimeru in reply to Jennyhadenough]

Hello Jenny, I believe she was tested for hepatitis of all sorts from her gastro and the results were negative. It took them forever to transfer her to a University that specializes in hepatology. Her ALK remains high, at 400, and all other levels are slightly above average, she just got done with her routine blood work so we will see if its shot up again or not.

[exy21 in reply to Rimeru]

My auto immune hepatitis was only diagnosed after a liver biopsy. Hep specialist said I had pbc but thought I had overlap but only a biopsy would confirm his suspicions. I am now on an immune suppression medication and it works in the main. Still have flares. In regards to seeing different doctors everytime. I refused after this happening to me on several occasions as they don't get to know you. It's called continuity of care. Be firm.

[Oidra]

Do get in touch with the PBC Foundation and get facts and help, It is free.

pbcfoundation.co.uk You can talk to somebody there and they are the experts. They also have meetings in different towns you can go to so you will not feel so alone. We are a very big PBC family all over the world and although it is one most people would not choose to belong to, we do what we can to help each other.

[Rimeru in reply to Oidra]

Hello Oidra, I will definitely check out the pbcfoundation, although I am not based in UK I find the community here more helpful than other websites and forums I have visited. Thank you for the reference!

[ninjagirlwebb]

So sorry about your mom; she is so young too. You are a good son to help her manage the condition.

Yes...please get in touch with the pbc foundation as per Oidra

[ninjagirlwebb]

Also your mom needs a liver specialist who is an expert in pbc & liver disease to help her. They will know what to do.

Hope you are able to help your mom.

[Rimeru in reply to ninjagirlwebb]

Hello ninjagirl, yes she is seeing a liver specialist, many actually, each time she has a follow-up appointment theres not one liver specialist that is consistent on seeing her for some odd reason. Thank you for your support

[ninjagirlwebb in reply to Rimeru]

Not sure where you are located. It is best to just see the same hepatologist & not keep having different ones. Insist on it & see what they can do.

Even doctors have different perspectives on how to treat & so it is best to go with the one that you have a good rapport with, is willing to listen and work with you as a team.

It has to be balanced so that you feel comfortable asking the whys etc. Just because they are experts does not mean we have no say in the situation. That is how I approach pbc management.

Good Luck!

[Susanlynch in reply to ninjagirlwebb]

Dr Christopher Bowlus is your man ! UC Davis health system Look at his abilities he is the Smartest in the US on PBC

[Jw120]

You are a wonderful son. Thank you for being the man you are. Please look at applying for help from The Assistance Fund. They cover my insurance bill and meds. They are an amazing organization. Take care and bless you!

[butterflyEi]

Sorry to read that your Mum has been diagnosed with PBC, you are a good son for being so involved. PBC like many of the rarer conditions can be difficult to diagnose and it is not unusual for people to take up to 10 years to get a diagnosis, this was also the case for me.

I note you are not in the UK. I hope these links will help you find more information which will then be relevant to your country of origin.

easl.eu/publication/the-dia...

and the

aasld.org/sites/default/fil...

as others have said the PBC Foundation's web site is a valuable source of information and they have a help line, as you are not in the UK they can use Messenger and Skype and they are always available to call you back or you can email them for help.

There is no particular diet for PBC however you may find this link helpful

liverfoundation.org/primary...

[butterflyEi]

You mention that doctors are running out of options at UC. There is quite a lot of chatter in various groups at the moment about bezafibrate which seems to help some who are non-responders to the Ursodeoxycholic Acid. As to Obetacolic Acid (Ocaliva) the people who were given the wrong dose of it are the people who suffered, the emphasis being that they were given the wrong dose not that Ocaliva caused deaths. There are many people who have thrived on Ocaliva. There is also a study of Seledalpar (not sure of spelling) which had to be stopped but after a peer review it is reported that it will be starting again. There is great hope that this drug will also be efficacious.

If your mother is still taking the URSO please check that she is using the correct dose for her weight (this is another quite common problem)

best wishes

[Rimeru in reply to butterflyEi]

Hello butterflyEi she was on Bezafibrate but the US version which is known as Fenofibrate but taking it at 145 caused stomach pain so will try to get her on a lower dose.

[K-nirk]

Rimeru - I have PBC and have been to six specialists. Three main stream hepatologists and three naturopaths, one of which specializes in the liver. (Dr Cabot in Australia). Ultimately they have all agreed that changing your diet can help reduce inflammation which can help lower your numbers in some people. I am one of those people, but I know not everyone here has the same experience. Eliminating gluten first and foremost and then sugar is very important. Many people in this forum seem to do a version of the Mediterranean diet. I am very strict with my diet and never touch gluten, rarely rarely eat sugar and usually if i do, it’s natural from berries. I also have severe gut issues and am doing what I can to heal that which is what many believe are a contributor to some auto immune diseases and overall inflammation in the body. I take a lot of supplements but one that my hepatologist is doing a clinical trial on now is berbine. There is a ton of info out there on supplements that may help, but ultimately getting inflammation down by eliminating food triggers and healing the gut...this should be focus number 1 in addition to the URSO she’s taking. I’m happy to share all the info I’ve gathered from these various specialists. I live in the Seattle area where we are luckily surrounded by great doctors. if you are interested please DM me.

[PBCRobert Partner]

Hi Rimeru.

Please contact us. We can use technology such as Skype, facetime, whatsapp, etc. We also have meeting technology which would allow us to speak but would also allow your mother to type in her language and me type in English, with the tech translating for us.

[e-mail]

[lilygrower]

Hi Rimeru,

Hang in there and continue to go with her to appointments and support her. Also, 1 month on Ursodiol doesn't always show it's not working. My levels went up 2 months after starting Urso, then have dropped to acceptable levels since. So continue that medication as you help her to make some dietary changes.

[Susanlynch]

Bless you for caring for your mother

[Bama_girl]

You are such a good son!!! Sounds like you are doing all the right things. You will never have regrets for being there for, and researching and doing all you can for your Mom!🤗