I am,after 20 years, now in the more advanced stages pf PBC and have developed Cirrhosis. I was told I had early varices about 18 months ago and these; whilst still quite small, have now been banded. Another is developing at the gastic-oesophageal junction but is not deemed to need intervention just yet. I was pxed Propnolol to assist with the portal hypertension which produces the varices, but, after several months perseverance, I had to stop. I had gone from being a 3xweekly cardio exercise at the gym to becoming almost zombie like. It was as if I were constantly struggling against a tidal current. Even my speech became a struggle. My local consultant then suggested I try Carvedilol and I take 12.5 mg daily in divided doses. My GP did not know what dose to give me and my consultant had specified a 'small' amount. I have mild asthma and my breathing is more difficult. Does anyone know what constitutes a therapeutic dose of Carvedilol ( I have never had cardiac problems and my BP has been in my boots for most of my life)? I gather varices can develop anywhere in the body and I am afraid to cease treatment as a bleed could prove fatal. On the other hand my exercise capacity-even walking-has diminished considerably. Thanks
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crundalite
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Hi Crundalite Sounds like we are very much at the same stage I take 12.5 mg Carvediol at night it can cause some light headiness at first but fine taking it now Liver Consultant at QEH Birmingham first put me on it after Endoscopy findings were early stage Varices and mild Portal Hypertension he said this will help stop any bleeding in the future and as you say bleeding can be fatal . Take Care x
I also am on 12.5mg of carvedilol daily. I was prescribed this last year due to varices, portal hypertension and cirrhosis. Have been a bit lightheaded at times if I get up too quickly but other than that seem to have tolerated it ok.
Hi mojo cazer here.read your comments on varices meds off to b/ham weekon Monday so may end up on similar.also do they still keep looking for reason for anaemia or tjink its pbc.my consult in Somerset still wants to hunt for another reason for it e.g. colonoscopy and I already had that a few years ago! !!! It's so frustrating do you get same prob?also I was told last year yhat liver was stable but it's as if blood results and actual state of liver don't tie up....I read somewhere that urso can bring down numbers but not effect actual damage so it looks like we are healthier than we really are! Did ask b/ham prof about this and he said some query over this but that was it!!! all the best cazer.p.s.3am oh I so love being nocturnal ha ha.x
I know exactly what you mean about blood results. My consultant did actually say 6 months ago that he was somewhat surprised at the results of my endoscopy (varices) and the cirrhosis as blood results were ok (billirubin etc). Have just obtained a copy of my most recent blood results from my GP (to take to consultant tomorrow) and it makes interesting reading. Mentioned to my GP that i had been having nosebleeds and the results show that my platelet count is abnormal. Assume that this is also liver related. Hope you managed to get a bit of sleep! Take care x
Thanks again Cavi and you too Mojo. It seems that we are all on the smae dose. Are there any plans to increase it for either of you?
You are quite right Marishoo that not everyone develops cirrhosis-but quite a few of us do and being aware of that may help with the shock of discovering that this does happen.
Has been no mention of increasing dose. I am seeing consultant on Thursday and will ask if taking at night may be a better idea to help with light headed feeling. My GP did bloods last week and has advised that I am anaemic again so this could also be a reason for feeling like this. I guess we are the unlucky ones to develop cirrhosis.
It probably will help if you take it at night but as you say anaemia could also be causing light-headedness. You look much younger than me and I hope all goes well with your appointment and your future. Take care.
Hi folks ive been told I have stage 1 varices and thereforh.p.h.tension. The endo was done at my local hosp but they also discovered stomach ulcers so I have meds for them and they said they would like to treat these before giving anything for varices. Am going to Birmingham in 2 weeks so wondering if they might prescribe what you are having. ...do you know if they are bad for your stomach?thanks.cazer
Oh im also anaemic and the local consult wants to keep looking for other reasons for the anaemia when and as far I tell the liver scarring itself can cause anaemia. ? Any thoughts? ??
SIo sorry for delay in replying! It was QEB/ham that suggested the carvedilol to my local (Wales) consultant so maybe he will suggest for you too. I was there last week but forgot to check on the dosage. No stomach problems with it for me, breathing is more suppressed, probably because I have asthma. Your varices sound early stage so banding probably isn't necessary yet and medication may well help to avoid it altogether. Best of Luck.
Thanks crundi...if you don't mind that for short yeah suppose will probably end up on similar stuff.its reassuring to speak to pbcers who are in a more similar position to myself well think you n mpjo bit ahead of me with varices treatment but I did put off my endo for about 5yrs as last one before that was awful. Thanks.cazer
Unfortunately the 3rd one I had after 2 lile you say where I had no problems the 3rd one was supposed to be under sedation but I was completely aware of everything. ..so it was awful. Last one I was knocked out completely as I refused it unless they did as I was so paranoid !daft I know but the result of a poorly done proceedure!x
Hi, I too am in advanced stages of pbc being officially diagnosed in 1997 after a second liver biopsy. I was diagnosed with small oesophageal varices last year but on repeat endoscopy they have got larger. I was prescribed carvediol but can't tolerate it at all well not enough to make a difference and have now been referred for banding and am petrified. I just feel like the transplant time is hurtling towards me and am so afraid.
I don't nknow when you posted above but I have just seen it. I am now off Carvedilol as could not tolerate. I have had varices banded on 2 noccasion although they were not very large. Basically same procedure as endoscopy. Gastro will look and band. I insist on sedation for both. One attempt at banding had to be abandoned as I was too aware and I experienced some ulceration on the next attempt. Its relatively quick. If it has not happened yet good luck. Better thyan being on Carvedilol.
I take cardividol and have done since March, like you was an energetic person but struggles to do most things now. Varices 3 were banded yesterday and feel sore. Janice
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