PBC and varices treatments

[Littlelilly]

Hi there, in July i was diagnosed with PBC liver disease at stage 3. I now have varies that need treating but I am not sure if taking beta blockers is safe or will it damage my liver more? Could have banding as an alternative.

[Huggy7614]

Hi little Lilly, I too had pbc and varices which progressed to grade 2. Was on beta blockers, to stop them potentially bleeding. From my understanding you want to avoid them bleeding at all costs, that becomes a serious risk to life. If the beta blockers help prevent that, and the man/woman knowing your liver condition suggests you take them, I’d listen. I did!! No bleeds before transplant!! Andy.

[Littlelilly in reply to Huggy7614]

Thanks Andy - hope the transplant has been successful for you.

I have a choice of treatment - either banding via endoscopy or the beta-blockers and they have asked if I will take part in a clinical trial to see which is best. This means we toss a coin to decide which treatment I have so I wanted to check if the latter would have any detrimental effect as reports suggest beta blockers further damage the liver in the later stages of cirrhosis. Thanks for responding and good luck on your on going journey.

[Huggy7614 in reply to Littlelilly]

Now that sounds quite interesting. From my own perspective, once I got to grade 2 varices, it was a choice of yes we can band or you can have the tablet. Whether the carvidilol damaged the liver further I can’t answer - but I was having blood test every couple of weeks almost!!

I really didn’t enjoy endoscopies (who does!!) so was quite happy to have a pill rather than be banded!!

Good luck with that. Be interested to hear how that goes.

Andy.

[Littlelilly in reply to Huggy7614]

Thanks Andy - I am now in touch with the consultant so I will see what he says.

[Yellowsydney]

Hi I had varicies that had to banded frequently and also took beta blockers, the beta blockers should lower portal hypertension therefore prevent varicies from rupturing. My varicies burst (before diagnosis) I lost so much blood i had a stroke, so you need to avoid that by doing everything possible.

Hilary

[Littlelilly in reply to Yellowsydney]

Thanks Hilary - it is such a mine field isn't it

[Hidden in reply to Yellowsydney]

Hilary, That's really bad luck. Have you had a good recovery from the stroke? Did the doctor explain why the beta blockers and bandings didn't prevent the bleed?

[Yellowsydney in reply to Hidden]

Hi, yes I've recovered from the stroke it was 10 years ago, at the time I wasn't aware I had liver disease the bleed came completely out of the blue so wasn't taking anything. I had a transplant 28 months ago due to NASH cirrhosis

Hilary

[Dotyy]

Hi Littlelilly, in some ways I’m reluctant to tell you my experience for fear of complicating your descision. I have pbc , post transplant but doing pretty good regardless. I had 5 bleeds prior to transplant , one happened 7 days after regular banding. I tried propranolol, that was the standard beta blocker then for portal hypertension. I think it being when I was pretty ill with stage 3/4 Pbc and cirrhosis I was weak ,very low platelets. I couldn’t tolerate them, my blood pressure was so low. They caused extreme dizziness and fatigue off the scale. Given by then I knew a transplant was more or less imminent, although I was in denial, I think if I could have tolerated I definitely would have taken meds for it. Bleeds as already said are very frightening and I count myself fortunate in so many ways for being here. I do hope you can tolerate the meds should you decide to take them. I wish you all the best in your journey, I guess you can change your mind at any point. Dotty.

[Littlelilly]

Wow, you really have been through the mill. Thanks so much for sharing. I am beginning to understand how different everyones journey is and I guess I need to have a little faith that the hospital team know what they are doing. take care of yourself.

[Wass71]

Hi, I have PBC, I'm currently waiting for transplant, on the list. I had a bleed not long after I was diagnosed with grade 2 varices. At the time I was on propanalol, which affected me badly with increased fatigue and dizziness.

I switched to carvidalol, which has been fine. The Dr's had no concerns about further liver damage. As with all these things, it's risk verses benefit. I'm now having a banding regime, which is not pleasant. After a couple of very distressing procedures they finally decided to do them under GA/ deep sedation. But the after discomfort of banding isn't great. I'm still using carvidalol, as Dr's at King's felt a belt and braces approach was sensible.

Going into a randomised trial I suppose it takes away that decision, which might be a good thing.

Good luck

Wass