Getting my head round this PBC

So 3 weeks ago I was told I had PBC. Put on urso I take 2 250mg tabs one in morning and one in the evening.

Felt a bit rough at 1st but appear to be getting used to it all. However I do have to watch what I eat. I'm reasonably healthy most of the time. But I do have a sweet tooth. Have found chocolate gives me horrendous indigestion heartburn. Can no longer eat porridge have done everyday for the past 2 years. Anyone no any reason why??? I tend to feel sick after tab in morning but it wears off ?? Also I have achy ankles when at work never did before ?? But appears to be getting less is it the urso?? My memory is getting worse ?? Normally hormonal but I'm totally loosing it lol anyone else like this??

This all said I have managed to get my head round this. I'm getting older things can go wrong were only human. I'm reasonably fit and otherwise healthy. What will be will be

Any answers to my questions will be greatly accepted. I'm 46 and just thought I I was extremely hormonal 😊

12 Replies

  • Hi I'm 63 and diagnosed in October. Many of symptoms you mention most of us have had or have. I thought many of mine connected to my under active thyroid but they are PBC related.

    My husband hates cooking for me as I am so picky now... What I mean is that I get indigestion or heart burn or pain under ribs with food and liquid I could take ok before.

    I am on 4 ursonand take them at night. Itch can be be horrible but as can aches and pains ,fatigue, dry mouth, pins and needles but urso is only thing at moment out there to help.

    If you need any help or advice Rob and the team are great on here.

    So is the community.

    Take care and all the best for the new year x

  • Hi Goldsworthyhelen. I live on my own so I make the most bland food, as this is all my liver is able to accept and then I still itch like hell. The worst of this PBC, so far for me, is the itching. Have a good 2016 and best wishes

  • All the best for the new year. Take care x

  • Dear louedwards, Your description is similar to mine when I was diagnosed 18 months ago. I found my body adjusted to the urso after several weeks. The mental fogginess was also something I had trouble with as well. Since it can be related to protein intake I have been gradually reducing the amount of protein I eat. I found increasing my fresh vegetables so I was getting more complex carbohydrates also helped my symptoms as well as increasing my intake of water. Unfortunately, the feeling sick in the morning can hit without warning even now for me, so I keep ginger ale available. A small glass will usually settle things down so I can get on with my day.

    It is an adjustment to realize that life has changed whether you wanted to or not. PBC seems to act differently with many individuals so I encourage you to try adjusting different areas and find what works for you. I adjusted my diet and went to all natural skin care products trying to reduce the load on the liver and gradually found a balance. My diagnosis helped explain some physical changes that had appeared from nowhere and gave me reasons to understand the changes were more than hormones.

    I also have a sweet tooth, but I try to limit treats. Of course, two of my students brought me boxes of chocolate candies for Christmas...oh, sometimes it is hard to be good! Take care...

  • Hi Louewards. Sorry to hear of your problems. Have no answers for you,just know we all sympathize with you and it is just good to know we have a support group who understand what we go through. Hope you feel better soon. I found it is better to cut out rich food and mostly gluten

  • Hi I found out about 3 months ago. I have all the things you wrote in your post. I get such a bad pain just under the breast right in the middle I have to go bed it makes me feel sick. I have porridge in the morning I like chocolate. I think now I will have to check everything I eat to see if its anything I'm eating or just this illness that I don't know much about. Im on 2 tablets like yourself morning and night. I don't know if you feel like me. My doctor knows nothing about my illness I can't ask him anything I know more than him lol. Good luck and Happy New Year.

  • Ask Rob and co on here,they will help,even ring you up! They will guide you in what you need to ask your GP and how insistantvyou should be. you know your body not them. I got info and DVD from liver north and took it to my GP and asked her to read and share. She has. Contact Joan at liver North for this.

    Do you know if anyone in your area is on PBC list as contacting local people may help.

    All the best for the New Year. X

  • You have a number of answers and posts of support, I would just add my wife described my feelings like she experienced hormonal y on a bad patch, look up Hepatic Encephalopathy (H.E.) on google, I had this real bad, others get it to lesser degrees (we are all different) protein does turn to ammonia in our condition, and ammonia affects the brain to cause problems, that include fatigue, brain fog, forgetfulness, and a sense of hormonal imbalance, leading to anger, frustration, mood swings, etc. IF this becomes a big issue for you, bring this up to your medical team! Rifaximin can help! Since it can and clearly is related to protein intake I have been gradually reducing the amount of protein I eat.

  • I cant add anything as I have only just been diagnosed too just to say this site is very helpful and you are not alone :-)

  • PCBNPCB Thanks I'll look. To be honest I have or had quite a high protein intake. I go to the gym like to keep fit. Not so much lately. But getting back on it. Maybe keep off the protein though. I am at the right age for hormonal changes though. It's so God damn irritating. Feel like I'm loosing it big time 😊.

    Thanks for all your messages and support

  • I thought the tireness was the menopause (Im 50) and was like you diagnosed a ew weeks ago. Still in a panic and have only decided today to take the 'urso' drug 2 x 250g a day. Took one this morning and had heartburn all afternoon seriously thinking of not taking one tonight.

    This site is so helpful at the moment to talk to others with the same liver disease.... that was hard to describe as a disease. I've not told my family yet, not sure if I should :-(

  • If I eat too much chocolate it makes me feel ill but apart from that If i see it and like it I eat it, a lot of people don't eat fats but i do and it makes me feel better, nothing better than a bacon butty in the morning for me anyway, bland foods make me feel ill and i end up not eating at all, ask your gp and gastro for advice, I was told to eat as normal so I eat what makes me feel good and what I enjoy. I take my ursofaulk 3 x 250 altogether with my evening meal 8 pm and don't have a problem with it anymore.

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