Carvedilol

[Jasper05]

Hi I'm just wondering if anyone is on carvedilol and how they manage on it also has it improved your liver or portal hypertension I'm just about to start this medication at the end of the week but would be very grateful of any information or advice thanks in advance xx

[AyrshireK]

It's the first line, liver safe beta blocker for treating portal hypertension.

They usually start you on a half dose to see how you tolerate it before upping it later if you get on ok.

My hubby was put on it by a locum but his liver specialist (at transplant centre) took him off it as he had already had a massive bleed so she said it was usually less effective when someone had such serious varices and instead she took the aggressive banding route for his treatment.

Hubby had generally low blood pressure so the carvedilol wasn't great for him - he also at the same time ended up swinging between constipation and diarrhea (linked or not ??). Anyway hubby didn't stay on it long but I know others tolerate it well and it does the job for them.

Katie

[Jasper05 in reply to AyrshireK]

Hi Katie thanks for your reply I've not had a bleed that I'm aware of but ct scans and endoscopy say I have portal hypertension only had my appointment today with the liver doctor at Manchester Royal hospital he wants me to try the medication instead of putting me thorough another endoscopy

I've read some of the side affects they scare the life out of you I've suffered with high blood pressure for a long time so I think that's why the doctor wants me to try this medication that's new to me x

[J4ck1369]

Hi there. I’ve been on this medication for about 6 weeks now. I had an endoscopy which showed no varicies but did show portal hypertension. I was slightly worried as , historically, my blood pressure has been on the low side. Anyway, I have been taking one tablet daily now for the 6 weeks with no side effects whatsoever. I don’t know whether it’s improved the portal hypertension as I didn’t have any symptoms.

[Inthegame]

Hi there jasper 05My partner had a varices bleed November last year, 3 banded 1 left, he was put on propranolol, but didn't get on with them, so he was changed to carvedilol 3.125mg ,one in the morning and one at night, for the portal hypertension , he is now compensated, and swimming along nicely at 66 years old, I think what Katie said was right , everyone's different, but if a drug isn't working for you, you need to let them know.

[Poinsettia3]

I take Carvedilol - 2 in the early morning and one at 7pm. I don't take it any later than this in the evening as when l first started taking it (at about 9.30pm) l had a couple of really disturbing nightmares. When l mentioned this to my Pharmacist he suggested leaving a bigger gap between taking the medication and going to sleep. No more nightmares! Or any other side effectsHope it works well for you. All the best

[Jasper05 in reply to Poinsettia3]

Many thanks xx

[ColinH324]

I am on 18.75mg Carvedilol, twice a day, for portal hypertension caused by Cirrhosis, caused by Primary sclerosing Cholangitis. Started in October 2022 after a massive bleed from varices around my ileostomy (Ileostomy created September 2018 after large bowel removed due to Ulcerative Colitis/Crohn's Disease).

It has helped to reduce the severity of bleeds, I tend to get 1-3 larger bleeds a month and seepage/small bleeds almost daily. I also have varices in my eosophagus, which have not bled yet, and have portal hypetensive gastropathy where the portal hypertension has started causing changes to the lining of my stomach.

[Jasper05 in reply to ColinH324]

You are going through a lot in very sorry 😞

[Dryfly]

I’ve been on this drug for some time. Although my UKELD score has gone up, and meets the level that I could be considered for a transplant list, I was told that my liver isn’t decompensating and as I’m otherwise ‘healthy’ (ahem), Carvedilol is working its magic so that I don’t need to think about this for now.

All the specialists that I’ve seen rave about this drug as a treatment (but never a cure).

Hope this helps.

[Jasper05 in reply to Dryfly]

Many thanks can I ask does it cause rapid weight gain as one of the side effects I've not started it yet just waiting for my prescription from my gp x

[EEvans]

Hi Jasper, I have portal hypertension also. I have something really rare called porto sinusoidal vascular disease (or non cirrhotic portal hypertension). I have been on carvedilol for the past 3 years with no significant side effects. I tolerate it well. It is reasonable as you have portal hypertension that you are on beta blockers as the carvedilol helps lessen the chance of a variceal bleed. Everybody is different, even though I am on carvedilol my disease has progressed and my last endoscopy in the summer showed varices which were small thankfully. The chances of a bleed I have been told is also small. My LFT’s are normal but my bloods seem a bit all over the place due to a moderately enlarged spleen. I hope this helps. Unfortunately in my case there is no treatment to stop the natural progression of the disease just management of any symptoms.

[Jasper05 in reply to EEvans]

Many thanks for your reply xx

[Kingbilly3]

hi I started these tablets feb last year 12.5 twice a day, they were making me dizzy and very very sleepy my dose was changed to 6.25 twice daily which is so much better now, I had a bleed thats why I went on them but no bleeds since, as for weight gain I have put one stone slowly since I started them a year ago, I have to be carefull what I eat as they make me very hungry but a little weight gain is not doing any harm it’s a small price to pay if the tablets are helping