Grannacat-pbc-ursodoil-liver disease

[Grannacat]

I was diagnosed with PBC in 2015. I am taking 2 Ursodiol 250 mg twice each day. I was diagnosed by liver biopsy. I see a gastroenterologist once a year and they act like it’s no big deal. I am currently trying to get an an appointment with a liver specialist. I eat healthy and take my meds.

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Are you in the USA, and close enough to the Mayo Clinic

[Grannacat]

I am in Alabama. I did find out that my Son In Law actually works with the only hematologist in my area. He said he can get me in to see him. Fingers crossed 🤞

[Ballymahon2 in reply to Grannacat]

Hepatologist

[Grannacat in reply to Ballymahon2]

Yes sorry about that☺️

[Yankeerose3 in reply to Grannacat]

That's awesome that your son in law works for a hepatologist. I'm looking forward to what the dr has to say.

Be sure to write down all the questions you may have so you remember to ask everything. It can be overwhelming and hard to remember everything

[Pamela4475]

My doctor does not seemed worried at all with my results also but I have monthly labs still..... was diagnosed last year

[Grannacat in reply to Pamela4475]

I have lab work once a year. I think that’s strange so I hope to get some answers soon.

[Pamela4475 in reply to Grannacat]

Yes... your lab should be every 3 months or 6 months st the very leadt

[Cyndylouwho]

Hope you get in to see the hepatologist. Keeping u in my prayers.

[Grannacat]

Thank you

[Yankeerose3]

My GI acts like it's no big deal, too. He just says to be sure I take 2 urso 300 mg twice a day and says to follow up with PCP for blood work & get ultrasound every 6 months. She says any liver issues he should be handling. I feel he doesn't want to

[Grannacat in reply to Yankeerose3]

It’s been a year since I have had an ultrasound. I don’t think my primary care doctor knows very much about PBC. I feel frustrated trying to get the right care.

[bobbycat in reply to Grannacat]

Not sure about the States but in the UK we have a problem with so many people seeing consultants . My last appointment was cancelled twice so I went to my excellent GP and she ordered an ultrasound and bloods....shes done the bloods regularly..glad she did as they caught the start of ascites (water retention) ...this comes with cirhossis though which I now have and is not so good.

Good luck and keep us posted.

[Grannacat in reply to bobbycat]

I am learning a lot from this site. There is things that I have read that I now realize are related to my PBC.

[PollyO in reply to Grannacat]

Gotta upgrade in the MD dept...my Gastro guy has me with 2 ultrasound a year...kid, Liv, and spleen and a blood work up with it.

One thing I haven't heard anyone here mention in the month I have been on this site is...the portal vein system which includes the veins in your esophagus. They are basically vericous veins that get enlarged and rupture. I have to have a scope once a year to band the veins where they bubble up.

You have to do that or medication for the pressure. Quite a bit of maintainence that a GP isn't going to handle.

[KevinHall10_ in reply to PollyO]

Do you have cirrhosis? Can a person instage 2 get varcies?

[PollyO in reply to KevinHall10_]

Yes I have cirrhosis and I don't know regarding the stages. It was never presented to me in stages?

[dlahullier0305]

Hi. I was diagnosed in December 2016. By the time i was able to get my furst liver biopsy it already showed that i had cirrhosis and therefore i am not a candidate to take ANY pbc meds. Consider yourself fortunate. Continue to take your meds and eat healthy. I need to add that you rwfrain from eating animal fat and absolutely no beef or dairy products which are total animal fat. This is what aggravates the condition because it is difficult for the liver to process it. Stay away from salt and foods processed with salt. At this time i have 2 tumors in my liver and I a have to take lasix to help eliminatw fluuds from my body because my liver is no longer doing that job, which is why at some point people develop ascites (retention of fluid in the abdomen). Stay on a diet as natural and healthy as possible with least amount of processed foods. I wish for the best for you. Stay positive and avoid stress. Don't stop going to the doctors and take care.

[PollyO in reply to dlahullier0305]

Huh...I have cirrhosis and take Urso so the scarring doesn't get worse? I am surprised you aren't on that drug?

[Lizzy1313 in reply to PollyO]

Me, too. I also take supplements focused on bile flow recommended by my naturopath. My GI says I'm in the compensating category.

[Grannacat]

Thanks I didn’t know about beef and dairy.

[KevinHall10_]

Im on urso 3xday. I don't know why...also take ocalvia. My alk phos was not that high,but the specialist still put me on it. Today is my second day of being gluten free. I will stick to this to see if i feel better . If not,Monday i will go see the dr. Dont really know why im so bloated but by Sticking to this diet hopefully this week my stomach will go down and stop hurting.

[Grannacat in reply to KevinHall10_]

I have an appointment today with my gastroenterologist to get my pancreas checked again. I am having a lot of pain and bloating in my stomach especially my left side. I have noticed that many people with PBC have pancreas issues as well as diabetes.

[PollyO in reply to Grannacat]

Spleen...

[Grannacat in reply to KevinHall10_]

Do you think your bloating could be from diet changes?

[KevinHall10_]

I'm not sure why some drs are like that, maybe because they see people like us or worse every day. I get worried, but nothing we cando beside take care of ourselves. Welcome...