New pbc member

New pbc member

I'm male 38 yr old recently dx pbc.. I live in Kentucky ,USA right now . I was very stressed and depressed when I heard that I have a pbc from my dr. even tho he said not worry .. I'm in 500mg urso twice a day. In the beginning of medicine it did make me very itchy and fatigue but slowly they are winding down .. I have no diet restriction except alcohol .. I do smoke socially rt now like 10 cigarets a week but I'm Going cold turkey soon .. I love drinking bourbon but I haven't drink scince I was dx 4 months ago.. To kill my alcohol craving I drink 2 or 3 light beer in a weekend only .. I have reflux , Lacoste intolerance , and may be irritable bowl too.. Anyway , I have decided to have another opinion about my dx so I'm going to the one of the best liver specialist from uni of Louisville on May 18th..

I do have a reaccuring uti it may be due to pbc that I have to talk with my dr..

This site is awesome I'm already feeling nice by reading ally the positive things about pbc ..


4 Replies

  • Hello Sachin1234.

    I was diagnosed with PBC Dec 2010 after starting to itch March that year. I was 45 when this happened and 46 at diagnosis. I am now 51 in a few days time.

    I started urso Dec 2010 but I was informed that it could take a few months to start having any impact. I encountered heartburn, a bit of bloating and something I was never prone to pre-urso, constipation. The heartburn and bloating vanished when I had been taking the urso for 3mths. I just adjusted my diet slightly for the other and I've had no real problems taking urso in the last 4+yrs now.

    My first bloods - the liver function test (LFTs) and the GGT - all showed to be a good improvement when I had them checked 2 months into starting urso. Over the last 4 years my bloods have slowly come down and they are pretty good even if still a bit abnormal but I am looking good.

    I did have fatigue back in 2010 but at some point the following year that vanished. Not sure if due to improving with urso as it is said that it can't exactly fix that in PBC. With PBC itching (or pruritis for it's correct term) and fatigue are symptons that are common. I have found the itch that I have has improved somewhat over time. I start feeling fidgety early evening and then by 11p.m. at night I do know I have the itch. I get broken night's sleep due to it and it can cause tiredness the following day later in the afternoon.

    I think changing eating habits if you think you didn't have a good one pre-PBC and making other certain changes in your life can make a big difference with PBC. For me I always thought I did eat healthily but I take even more notice now of certain things. I don't have artificial sweeteners for eg., don't have MSG and other certain food additives either. I try to make meals from scratch so I know what is in them.

    I chose not to have any alcohol back in March 2010 when I got the first abnormal LFTs taken but I was never much of a drinekr anyway so for me I just do not miss it. Having the odd drink with PBC isn't actually going to do too much harm, think personal choice here. I choose not to as I would prefer not to put any strain on my liver now if I can avoid. I have never been a smoker and again I reckon a doctor would advise you to quit so your system has less to deal with.

    We can be a bit lax using certain vitamins in our body with PBC, the fat-soluble ones like D, A & K. Vitamin D we can make ourselves so make use of any sun you can for around 30mins a day, now we are looking up temperature-wise here in the UK I am even if it is just for having my lunch in the sunshine.

    I do think it is a good thing with having PBC to cut down on fats but we still need them. I have never been one for take-aways or fried foods so again that isnt' an issue for me. I do still enjoy the odd bit of pizza but it's not an overly-large portion.

    I did recently read that eating an apple can help neutralise the digestive system and help avoid things like heartburn and something called dyspesia. I love apples anyway and I have been peeling and having one of those early evening more of late.

    I walk a lot, I think that trying to keep fit is a good thing with having PBC. Know it can be difficult for some with bad fatigue of PBC but for me I find that I dont' feel the prickles of the itch even during the day if I am on the go a lot as I am.

    There is a free dvd that can be sent to you all about PBC. If you click on the link it will take you to a UK site Liver North and they can sort that for you via that. You can also read their newsletters on there too or ask them to email you them when they are published. I expect you already know about the PBC Foundation.

    Hope this information has helped you. My motto these days is to enjoy life and having PBC now I resolved a long time since that I don't want to know what might be ahead with PBC as it might never happen so I'll deal with it as and when.

  • Welcome to the group Sachin1234

    I was diagnosed 10 years ago and for the most part am fortunate with my symptoms. I do get the "funny feet" with a little discomfort up the legs, I suffer with indegestion and of course the itch cannot be ignored! However for the most part as with most other contributors I make the best of PBC.

    I have found that stress is the worst thing for me, it sets off so many other symptoms which may or may not be PBC related but are most certainly a nuisance. As to diet I have found it is best to avoid fatty foods, difficult when you are invited for dinner and the hosts have prepared a sumptuous feast (I am thinking of dinner last night) ending with chocolate gateau, icecream and raspberry couli, all delicious and I could not resist but I am paying the price today - hey ho!

    Best wishes for your appointment on the 18th of next month, do let us know how you get on.

  • Welcome to the group ! Keep us updated on your nxt appt I have ibs chronic fatigue also so far the dreaded itch has stayed away x

  • Hello cowre.

    I sincerely hope that youi never have to experience the itch. I started with the itch early 2010, that is how I got to be diagnosed with PBC Dec 2010.

    Although taking urso and itching for over 5 years now, it has altered somewhat over time but I still have it. It can be a bit debilitating at times and one thing I used to like occasionally was going to see a film at the cinema early evening. Alas I'd nto be able to sit still long enough now as I start feeling prickly early evening and then the itch has appeared by 11p.m.

    Unlike yourself I only had fatigue at the start when I was itching. At some point in 2011 it vanished. I do get tired some days due to broken sleep during the night due to itching but I still feel pretty energetic and like to be on the go.

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