PBC

I have been diagnosed with PBC recently and am terrified I am going to die. I am very emotional and cry when ever I talk about it.

I don't understand the blood test results but know they are not good because of the reference range.

Alkaline Phosphatase * 177

Aspartame Transaminease * 69

Alanine Transaminase * 92

GGT * 368 (really worried about this result)

Love to know how I can reduce these levels PLEASE HELP!

Since diagnosis I have read a lot of posts from people with PBC but find it hard to get information regarding diet. Some say regular Coffee is good for the liver, others say don't drink it at all. I can drink dandelion tea and coffee that I thought might be good but have read it's not good if you have PBC.

I suffer from extreme bloating and spasm like pain when I eat or drink, worse in the evenings.

I Am trying to drink 2 litres of water a day but struggle with still water and I don't know if I can drink sparkling.

I suffer with fatigue so as yet to increase my exercise regime other than walking my dog.

I know there are people with debilitating diseases a lot worse than mine but I would like to improve my health to live as normal life as I can.

I hope I don't sound like I am wingeing. I am 60 years old with a lovely husband and 2 amazing married sons and have my first grandchild on the way.

Any advice I will be really grateful x

26 Replies

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  • Hello Twill.

    Well I'd give it a bit of time if you are newly diagnosed and starting on urso as the bloods can change quite considerably after taking urso. I was diagnosed Dec 2010 when I was 46 (not far off being 52 now) and I got pretty good results with the liver function test (LFTs) on a first blood check with urso only 2 months later. Your results at a glance look pretty good to me compared to what mine was in 2010. (I think my LFTs would have been much better sooner had the wheels of the NHS not turned so slow (I am in the UK) as it took 9 months to get to a diagnosis and it was all done via blood work so I think it could have been got to sooner.

    Coffee is said to be beneficial to the liver but apaprently in a moderate amount like 2/3 cups a day, not in excess. I once posted a short piece on coffee on this site from a site (I did years ago get their magazine) called WDDTY (What Doctors Don't Tell you). I am not sure abhout drinking 2 litres of water a day, recommended is said to be about 8 glasses per day. I sometimes measure out a pint of water and drink that from time to time but all it does is make me keep running to the loo or making me feel too full.

    Some of the symptons you are experiencing may dissipate when you are established with the urso. I did get a few initial side-effects after starting urso but these vanished when I hit the 3mth mark with urso.

    I did ask regarding diet before I was diagnosed with PBC and after and the consultant just said to eat as normal so I just continue as so. I wouldn't say I was unhealthy pre-PBC but after diagnosis I simply cut down a bit further on fats (can't cut out altogether, need some for the fat soluble vitamins like Vit D and A). I try to eat roughly same time every day, makes me feel a lot better. I dont' really eat anything following the evening meal, find it works better for me.

    I started itching early 2010 and that is why I went to see a GP and then was informed I had PBC that year. I did have fatigue at the time but thought nothing of it. For me fatigue vanished at some point during 2011 but I do get tired later in the afternoon some days due to broken sleep at night due to itching. I used to itch almost all the time back in 2010 but over time it has altered pattern and now it tends to be just the later evening until around 5a.m. I get prickly during the day if I sit about and do nothing even for a short period of time so tend to be on the go most of the time.

    It is said that most people who are diagnosed with PBC tend to die with it but not because of it. I know if I didn't itch I'd not actually know I had PBC.

    You definitely need more time to accept that you now have PBC and it won't go away but can be improved on sympton-wise. I think as more time goes by and things seem to be rather the same you then start to realise that life is for getting on with, enjoying life, making memories as this is my motto. I do what I can when I can and decided long ago that I would deal with things as and when and not spend time meanwhile worrying about something that might never actually be.

    Congratulations on the pending birth of your first grandchild. I am about to become a grandma for the second time, this time it is my son who is about to become a father.

  • Thank you so much Perodot

    The advice u have given me is very reassuring. I am very touched u have given up the time to reply with this useful info.

    I will keep in touch

    Take care X

  • I agree = new to the site and PBC, sadly. You cannot change what is and you have to move forward. I have two beautiful granddaughters who I enjoy immensely and hopr to have more down the road after my younger son gets married this year,

  • Hi Twill,

    Suggest you contact those friendly supportive people at the PBC Foundation as soon as you can.

    You'll find the link at the top of this page, although you may have to click 'read more' to get their telephone number and e mail visible.

    Please give them a call as I'm sure you'll find them very helpful and reassuring.

    Also try not to research or google the condition too much as there is huge amounts of inaccurate and out of date information on the internet - that can worry you silly.

    Take heart, between the PBC Foundation and everyone who uses this site, there are a lot of people who you can chat to and lean on. By the sound of it, you've only been taking URSO for a very short time and you may need quite a bit more time for any effects to show.

  • Thank you badpiglet for your reply. Yes I have only been on Ursodeoxycholic for a few week. I will have to cut down on google info a lot of it is scarey x

  • Hi Twill,

    I too am recently diagnosed. I have been on urso now for just over a month. after just 2weeks my liver function tests started to improve, and I'm hoping they will further improve, next test due next week. I also had an ultrasound scan to assess any blockages to the bile ducts, and thankfully no visible blockage or damage.

    I totally understand your fears. I have spent the last month trying to get my head around this condition. this forum and information from the PBC foundation has been invaluable. after much reading of foundation literature and posts on here I am finally coming to terms with having this condition. My biggest fear now is whether I'll be able to carry on with my life as it is now. I do lots of exercise...running half marathons, circuit training a few times a week...I wonder whether I will continue to have enough energy to do these things. My other realisation is that I won't be able to enjoy a good drink like I used to!! My partner is in a rock band so socialising features heavily in our lifestyle.

    I don't worry about dying from the condition, I think this is very rare, especially if pbc is diagnosed early and Urso is prescribed.

    My only advice would be to join the pbc foundation and get your information from them, and just take some time to absorb your diagnosis, and then try and get on with life pretty much as normal. This is what I'm doing, but I think it does take a little time.

    I forgot to say earlier, I'm 48 years old and looking forward to the time my boys settle down and give me some grandchildren 😊.

    welcome to the forum, and congratulations on expecting your first grandchild.

    take care

    Hilary

  • Hello Hils67

    Thank you for responding to my post. I can't believe the amount of exercise you do it puts me to shame. I have trouble walking the dog some days.

    The info you gave me was really helpful and encouraging. I have just joined the PBC Organisation and am waiting for their information to come through.

    Take care x

  • I'll miss my glass of wine as well and happy hours will never be the same but it is a small price to pay for living longer.

  • It's frightening at first but I just carry on as normal. urso slows the process down so stop worrying if you read comments on here you'll see a lot of people are worse off than yourself

  • Hi Twill, I am newly diagnosed and still waiting on my specialist appointment to get the urso, I just wanted to say I found some posts on here to be very reassuring and the info from the foundation really helpful, if you only do one thing let it be joining the foundation, you'll be glad you did.

    I'm a grandmother to two grandsons and 3 of my sons partners are all due again this year, I just hope I have the energy to keep up with the babysitting lol.

    We will all have bad times and like when our kids were young we will cope with it as best we can. As I said good luck with it all and focus on the good stuff.

    Peridot gave some good info to me when I posted on here, ask for the dvd info from the livernorth or liver trust peridot advised me about its very informative.

    All the best

    Carol

  • Hello Twinkle26

    Thank you for replying to my post I found your information really helpful.

    Wow.. It sounds like you have a large family that keep you busy. How many children do you have?

    I am 1 of 8 children so know how fantastic it is to have a large family. Unfortunately I live 180 miles away from them but I do visit regularly and they come to visit me.

    Hope to keep in touch

    Take care x

  • Hi Twill, I have 4 sons, 2 grandsons and 3 on the way lol.

    Should be a busy year all round.

    I'm glad I helped a bit, it's all new to me still.

  • That will keep you delightfully busy!

  • Please try not to pamic twill

    There are a lot worse diseases to have.some of my lfts were over a 1000 and then did calm down .that was 17 yrs ago....i had 4 small children 1 of which was a ptem baby and they are now all nearly adults.

    Bloods can be abnormal for years before you get to the point where thongs are life threatening.

    As far as helping yourself is concerned tips i was given

    ...

    Eat little and often but not too much fat but dont cut altogeather.

    ...

    Drimk water but gradually over the day not in huge amounts in one go.

    ....get them to check your vitamin levels you could low on the vits a e d and k the ones we dont absorb very well

    Also a bone scan as pbc can affectbones but this is reversable .

    .....be kind to yourself..rest and give yourself chance to absorb what is a shock before you dive into a drastic change in diet

    .....the urso ...take it youve been prescribed it?should help stomach

    ...

    I had lots of irritable bowel types symptoms but they can calm

    ....do a few nice things ...take your mind off the diagnosis and try to de stress ...this is not good for pbc

    ....worrying will only make you feel worse.

    It is most likely that you will live to an old lady.i was 36at diagnosis at the time they said i might need a transplant in 5/10 yrs time bit we are 17yrs further on!!!!!so its surprising how much better we can do.

    When you have your next appt ask where you are with the pbc

    ....i wish lots of good wishes to you..

    Concentrate om the fum stuff and please try to cut yourself some flack.

    Rimg the pbc foundation i did and i felt a lot calmer when i did.cazer.xx

  • Thank you so much for your reply. The people on this forum are brilliant and so so helpful with their stories and encouragement. Wishing u and your family well. Take care x

  • Yhankyoi twill

    Its nice to know we can be of some use...i agree with you its a great forum and it feels like we can air our problems without anybody being annoyed but also have a laugh and that is very important with a wierd condition like this one which no one can even spell !

    Do you have a non active hobby im in choirs.... very good for the morale ...i sit down for it due to fatigue but highly recommend it as you cant think of anything else when you are singing.x

  • Now you r having a laugh! me in a choir I can't sing the hymns I find them too high pitched. Joking aside I have lots of hobbies, I just need to find the motivation to do them.

    I really appreciate your advice Cazer thank u so much. Take care x

  • Ah you sound like my sister...she was never allowed to simg at school but ive heard her sing and she can but she has a lower voice...an alto quite normal and common but it means you cant sing the higher notes and that sometimes gets misjudge as people not being able to sing

    Anyway maybe thats not something youd enjoy...i kmow what you mean about gettimg motivated its the fatigue its like someones zapped all.the energy out of us .pick the one you enjoy most that is not physical ideally and ..... the housework!!! Ha ha Seriously tjough the dust will.always b there

    Get someone else to do the heavy stuff if you can or if you can afford it an hour or 2cleaning help to change the bed and hoover.flash wipes etc are great and can be easier to use.best wishes.cazer.x

  • Thanks Caser you r really kind about the singing I actually don't think I am too bad. My husband says I would b OK as a backing singer (way back) ha ha...

    Take care x

  • yes! I found this by accident and I am glad there are some success stories here. Hoping for the best and taking advantage of the time better than before.

  • I was also recently diagnosed and understand what you are going through. This is my second auto immune disease the first being problems with my parathyroid gland which resulted in two surgeries. The first doctor couldn't find it (idiot) and the second did. It was removed. That was in 2010. I was put on synthyroid and liothyronine. Immediately after my liver numbers were going south but my endocrinologist said it was not significant and we should wait. 4 years later when all liver numbers were off the charts I told this other idiot that something was very wrong and what kind of doctor should I be seeing for this.

    I was sent to a gastroenterologist next - still no clue. Was it fatty liver? NALD? Liver cancer? What?

    Scans and an elastogrophy followed and I was called in.

    This is how the conversation went. Well it looks like PBC but don't worry I have patients that have been on medication for years and another who successfully had a liver transplant. Let's make an appointment with the liver center and see what they say.

    I made my appointment, went home, researched this disease and fell apart. I thought I was going to to die. Stages? What stage am I in? Life span? Cirrohsis? I sat in my closet (it's a walk-in - I'm not crazy) and cried for hours. How could I tell my kids? My younger son was getting married in a year - would I even be around to see his children?

    Then I had to go for the biopsy - that was not fun - and then meet with the hepatologist at the liver center.

    You have Stage 2 PBC - which they said showed scarring of the liver but not so bad. Like what does that mean. They put my on 500 mg of Urso 3 times a day. Sometimes I take only 2. After 4 months on the medication 2 numbers are normal and one is on the border. I am fortunate.

    Although I do not know how long the drug will work or whether or not I can stay where I am for a long time I am a little relieved.

    It is such a weird disease. I never heard of it before I got it the same as the parathyroid thing. I told my kids but no one else except a good friend. Not even my brothers and sisters. We are 1 year apart and I am the oldest at 64. I got it all and they are all fine - no health issues. I had none either until all this - it is easy to get depressed.

    I have minor symptoms nut I am also thalessemic so my immune system is not that great so catching bugs - I have one now- tends to last longer.

    They do not know why people get PBC. There are not enough of us, so the drug companies are not particularly pressed with finding alternatives and there is no cure in sight - only a slow down of bile duct breakdown is on the table.

    Urso does not work for all but my hepatologist ( a fantastic doctor and liver center) tells me another drug is ready to get approved for others where URSO does not work.

    I am in the states and its all about the money. So I do not expect a cure in my lifetime. PBC was once the primary reason for liver transplants. I am not sure where it stands today.

    Day by day - taking time to smell the roses and do what's important in a positive way. I would say get a dr. who you can trust, read and ask questions. No one cares more about you than you!

    We come into this world alone and we go out alone but I'm not going without a fight!!!

  • Hi jiacheetah

    I found your post really interesting.

    My doctor wasn't very informative albeit he is really nice.

    I was put on Ursodeoxycholic not having a clue why.

    I went home and researched the drug and found out from the Internet what I was probably taking the drug for.

    On my second visit to my consultant I asked him if I had PBC and he confirmed I had. I asked him what I could do to help the condition and he said nothing and that I would have 6 monthly blood tests to keep an eye on Lft's.

    I went home really anxious and immediately went back on line to find out as much as I could.

    Joining this forum and The PBC foundation has been the best thing I did and reading the posts of all with PBC has helped me so much. I don't feel alone and the first thing I do now in the morning is go into my emails.

    I still am frightened when I get pain in my liver area and when my stomach bloats and I get spasm pain but there is always someone out there that can reassure me.

    Hope to keep in touch

    Take care x

  • I asked my doctor about the pain on my side as I thought it was my liver as well and it scares me because I think something bad must be happening.

    They Liver center told me that the liver, per se, does not cause pain but the colon can and because they are close they could be mistaken as to where the pain is generating from. They told me that when that happens remember what I ate and perhaps eliminate that particular food from the diet.

  • Hello again Twill.

    If you aren't aware already there is a free dvd on PBC that Liver North can send you. I'll post the link here. You can also check their newsletters out online as I have found they cover a lot on PBC each and ever issue.

    livernorth.org.uk/

  • Hi Peridot

    Thank you for the info about the dvd. I have seen it and was really pleased with the content, it really helped me understand so much more about the disease and I am not as worried now the details of PBC have been explained.

    Hope you r keeping well

    Take care x

  • Thank you for your reply Twill.

    I have found in the last 5 years that this PBC can be quite puzzling at times how the LFTs (liver function blood test) can vary between everyone but at the same time only someone on here with PBC and the itch it can cause knows exactly how to describe it.

    Doing as well as can be expected at present or in other words, plodding on...

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