Hi, I'm 41 and in the south west. I saw my GP for a cholesterol check and two blood tests, an ultrasound and eight days later I had an unofficial diagnosis of PBC. Then a couple of days before Christmas a few weeks later I saw my consultant to make it official and get medicine.
I'm a bit lost and confused, should I give up meat or increase my protein? Should I go for low carbs or increase them? I don't know if I'm aiming to lose weight or gain weight. Do I ask the consultant or the GP for a nutritionist referral? Should I be getting the amount of urso the pcbf suggests or is that just a rough guide?
I've read a lot about the early stages and a lot about transplants, but not found much about the middle bit. How long can you last with cirrhosis before things get ugly? Do you need to be checked for ascites or does it come on quickly and obviously?
Sorry, that's a lot of questions but everything happened so fast I didn't have time to think.
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hells456
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It is scary when you first learn you have PBC. We all have been there. But, the reality is not as grim as you think. It is a very slow progressing disease. If you will respond well to Urso (one of main medicines for PBC), or other meds, it'll slow down the process even further. There are people on this forum, who have been diagnosed more than 20 years ago and still doing fine. For diet, use common sense. Balanced diet, full of veggies, fruits, fresh meats, berries, whole grains is mostly what you need. Stay away from very salty and very smoked foods (like smoked sausages, meats, fish and aged cheeses). You should continue living your life, like you did before, maybe even healthier. Stay active, exercise regularly and don't think about PBC. There is a wealth of information on the web. Talking to your doctor, certainly is a good option. This forum is also very helpful.
You need to establish what stage you are in, if you do have PBC. For that you'll need a liver biopsy, which is not a big deal. Most of us had it. I presume you've done all the bloodwork already, this is how your learned you may have PBC. If you do have it, you'll need to monitor it. Usually it is 2-4 times a year bloodwork and once or twice a year shear wave ultrasound. Some people go for fibroscan, but, it is not considered as accurate as s-w ultrasound. It also depends where you live, which country. They may have their preferences in testing and monitoring. Looks like you are asymptomatic, since you learned about PBC by accident. Stay optimistic. You may never even come close to late stages. Read about it, but, don't obsess about it. The commonly used saying about PBC - you are more likely to die with PBC, than from PBC.
Cheer up. Staying positive and active is very important and not only for PBC.
Thanks, your reply is really useful. I have a fairly balanced diet but I do love my red meat and eat about five times the recommended salt. I am trying to cut it way back, which is making me headachey and dizzy, hopefully that will pass soon.
I'm in the UK. I haven't been told about what stage I'm in but he seems to be treating it quite seriously. I've had blood tests which weren't good, a fibroscan that was high and an ultrasound that was normal. I have a pile of results but without knowing what they really mean they don't help me. I have a bone density scan, endoscopy and more blood tests and ultrasounds coming soon. The doctor didn't mention a biopsy so I don't think they are doing one but I will ask when I see him again next month. He was reluctant to talk about anything beyond these tests so hopefully I'll find out more when they are done and results are in.
US docs like biopsies. It is no longer the standard of care in most places if they can do a fibroscan, unless they think you have an overlap with autoimmune hepatitis (AIH).
I am also in the UK and was diagnosed in 2006 but had probably had PBC chuntering in the background for a least 10 years prior. The doctors in the UK don't seem to stage the disease as they do in America although the world of PBC is moving on and that may change.
As iagra has said the diet is best if it is rich in vegetables, avoiding salt and sugar and smoked foods. The Mediterranean diet seems to be a useful one to follow although I have reduced the amount of red meat that I eat to once a week, we need a varied diet to ensure we keep our vitamin and mineral levels balanced. The amount of URSOdeoxycholic Acid that you are prescribed should be relative to your weight. The Patient Information Leaflet (PIL) will give you a guideline of how many tablets you need per kilo of weight which I think on my PIL is 12-16 milligram per kilo. An example, I used to weigh 89 kilos (far too much for me) and was prescribed 1250mg in the guise of 5 tablets a day. I have dropped down to about 69 kilos and now take 4 tablets which is 1000mg per day. You start URSO spread across the day but after three months once your body has adjusted you can take it all at once. I find it is best taken with food otherwise the medication can come back at you. Not everyone does but if you have tummy issues at the start you may be prescribed omeprazole but best to find a way to take URSO that suits you and your tummy. Some take it at bedtime to sleep through any discomfort which may occur. We are also now lucky to have Obetacholic Acid (Ocaliva) which is a second line treatment (URSO is the first line treatment) which was approved for use in the last 2 years.
Reading about the progress of PBC can be quite scary and it really does not apply to everyone. Some of the data will be based on people who also have other issues or men whose diagnosis often comes late in the disease and their need for transplant is therefore more pressing. Robert from the PBC Foundation has written a good piece on PBC and Life Expectancy which you can find in pinned posts on the right hand side of this page.
Each of us is different although we may all share the PBC diagnosis, some of us live for a very long while without experiencing ascites, for myself I have no ascites. I have had an endoscopy and an ultrasound but I was over 10 years into my PBC before I had either. Perhaps someone who has had ascites will come along soon and share their experience.
Join the PBC Foundation (free to join although donations help keep them afloat as they are not government funded) in the member's section you will find the EASL guidelines. They are worth a read. If you have a good doctor you will have great support, if they are not so open to PBC you will need to become your own advocate so groups like this and on facebook are an absolute godsend. If you have a need the PBC Foundation has a help line and they are happy to help.
don't worry about how many questions you ask you are on a learning curve.
I read in the PBC foundation that it should be 13-15mg, but I'm on 1250mg and I weigh 62kg, which is more like 20mg per kilo. I've been taking two in the morning and three at night with food as the label says. I've not had any side effects other than struggling to swallow the giant horse capsules. I'm having another blood test in three weeks to see if they are working. Again, all the information says they should check after a year, not six weeks. My GP is amazing and my consultant seemed very knowledgeable but nothing is going as I expected.
I did see the life expectancy pinned post, but to be honest, I was too afraid to actually read it. I will go and have a look as it doesn't seem to be doom and gloom.
You've lost so much weight! I hope that was by choice and not through the illness.
Your patient information leaflet should have a guide as to how much your particular tablet should be. It is also possible that the specialist has started you on a higher dose so please do not change anything until you see either the doctor/specialist to check dosage. Yes the capsules are quite large arn't they but for me they are not as big as one other tablet that I take. I am impressed that you will have a blood test after 6 weeks I think that is very good, it will help to give you a base line and then in 6 months to a year the next set of results will give a good idea of how things are going for you. Do ask for copies of your blood test results - As the PBC Foundation says "its good to know your numbers".
Yes my weight loss was by choice, at 5' 2" and a bit, (mustn't forget the bit!) 89 kilos was far too much - I could probably have rolled down a hill quite nicely
I found out last October that I had positive AMA .....but am still undergoing tests and not been prescribed any medication as yet ...
For nearly 3 months I was housebound, fatigue nausea and fear of going out .
It was a milestone birthday last week and my family had planned it in Dublin .
How could I let my children and grandchildren down ? ....I started therapy. tried to understand my condition and on December 29 th , I managed to get to Heathrow and fly to Dublin ....the fatigue was with me but mentally I feel good and accepting of the pbc journey .......I have an mri scan on Monday and hope to come to terms with it all very soon .....
My diet has always been good and I have promised myself a return to the gym next week ......
You will get there. You will gain the knowledge to be at peace with yourself .
You sound like me! Everything is a struggle and it takes so much effort to do anything. Well done for making it out to Dublin. I'm the same, I feel awful about letting my family down. I'm already so tired that my husband is having to pick up the slack with shopping and cooking and cleaning while I just sleep. He's been wonderful but I feel so guilty and lazy. I'm terrified for the future, my daughter is a (very young like) 18 and my son only 12. We don't have any family or friends closer than an hour away and I'm the only one who drives. I just can't imagine how we're going to cope in the future.
it may be a good idea to get your thyroid function checked even though fatigue is a well recognised symptom of PBC. Low B12 and low Vitamin D can also add to fatigue. Hopefully once URSO starts to reduce your numbers you will feel less tired but if none of the above applies then the wisdom from those who know better than I seems to be to try and exercise even if that exercise is just laughing. A little walk in the fresh air will help stimulate those little endorphins which make us feel a bit better. Please do not feel guilty or lazy, you have a genuine medical condition which you need to come to terms with but once the medical bods have you stable you may very well be as you were before and if not you will have learned better how to cope and we are all here to help
You're like some sort of genius! I DO have low B12 and will be getting injections once my GP has my notes updated from the hospital. Odd as I eat a lot of meat. It's great to hear that may be causing some of my tiredness, I want to get back to giving time to my kids.
My blood test in a few weeks will check LFT, creat, calcium, thyroid, vit D, AFP, AST, clotting and something called extended PBC Blot? I understand maybe half of those. This forum is giving me a lot of confidence in my doctor, he seems to be very thorough.
I only know this because I have pernicious anaemia. If your results come back and you do not have the "intrinsic factor" you will need B12 for life. I have also been found to be zinc deficient.
I don't think I was tested for intrinsic factor, my blood test result says macrocytic, no target cells. Haemoglobin above high reference limit. B12 is 140 which doesn't look that low. You are a mine of information!
Welcome to the PBC family sorry though that you have been diagnosed. Don’t worry to much easy to say I know. Eat healthy don’t drink too much alcohol if possible none is good, avoid fatty food, pastry etc. You could google Liver friendly diet basically make life easy for your liver. I am in my 10th year of diagnosis but not sure how long I have had PBC and no cirrhosis but bloods fluctuate a lot!! This foundation is great as all of us have been where you are and lots of help and support can be gained. Good luck, ask lots of questions hopefully you have a good GP and find a good hepatologist job done.
Thank you, I will look up liver friendly diets and make a few changes. Luckily I've never liked alcohol, tea tastes much better! I didn't realise bloods could fluctuate, I was picturing them just getting worse and worse from here.
Hi, I am another one who was diagnosed late 2018 so just over a year ago. I have a teen son as well so can relate to your concerns however I hope this site wil reassure you.
Do you know the fibroscan results?
Generally Urso seems to be very effective and has brought my liver function tests back into line. I also saw an improvement on the fibroscan result after 6 months of Urso. Tiredness is my biggest symtom and I also found out I had Sjogrens as it is common to have multiple auto immune conditions. Some of the scheduled blood tests could be for screening of other autoimmune conditions
Do read the life expectancy post but generally you can expect to die WITH pbc rather than FROM it so no reason why you shouldn't be well for many years.
I was also on a higher dose of Urso at the outset and this has now been lowered to 750mg. I have not been advised to follow a specific diet although it makes sense to avoid anything which could harm your liver. I rarely drink alcohol.
The tests they are following up on are sensible and I had similar - I now treat the checkups as a regular healthcheck which is actually positive as anything else will be picked up early. My follow ups are every 6 months where I have blood tests and Fibroscan.
There is a PBC app which you can use to enter your results so you can see trends but that will only help when you are a few years down the line. Very few GPs will have experience of PBC so will follow guidelines on treatment. I think a referal to a Liver specialist will be useful as they have greater knowledge, the consultant I see treats PBC as routine which is reassuring.
You sound so calm and confident for someone so recently diagnosed. I can't tell you how reassuring it is to hear your treatment was similar in the beginning.
I clearly need to do more reading and just ignore the scary bits. I thought the Urso kind of held you in place to stop things getting worse, it's good to know it can actually lower your blood test results.
My fibroscan is 16.4, which the consultant said was not good and I've had this a long time. I had high LFTs when pregnant with both kids, but that was put down to severe Pre-eclampsia, now I'm wondering if that was PBC.
This is tricky with teenage kids, they are old enough to see everything going on and it's hard to shield them and stop them worrying.
Hi
I think you are coping really well. I have Nash but also have all the symptoms of pbc, not sure whether to ask Dr to do bloods for this, would this just be lfts? Take care Lynne
Don't worry, be happy, and hope the Urso is effective for you. On the lifestyle front, I studied these issues so much after my diagnosis I became a certified nutritional health coach. If we can limit flareups of the disease and maximize time in remission, logic says we have a better chance of living a normal and very long life, right? So … everybody is different but what has worked for me is taking my Urso every day, drinking lots of filtered water, regular exercise that gets my blood flowing and also builds muscle and flexibility (feel free to message me on details), and I eat a balanced diet of mostly unprocessed foods . I do my best to eat organic and avoid GMOs, and try to eat lots of veggies and a protein and food-derived superfood shake every day. I also did an elimination diet which taught me I have a bad reaction to gluten (and an even worse one when the gluten is an additive in manufactured foods like soy sauce) so I don't eat gluten anymore. That sounds really hard but after 4 years I feel great and it's just become a habit.
I've had PBC for 20 yrs. I'm now stage 3 and still doing pretty well. My doc had me cut back on red meat. Good luck to you. It is scary at first, but you'll learn to listen to your body. Tiredness is a biggie.
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but for me they are not as big as one other tablet that I take. I am impressed that you will have a blood test after 6 weeks I think that is very good, it will help to give you a base line and then in 6 months to a year the next set of results will give a good idea of how things are going for you. Do ask for copies of your blood test results - As the PBC Foundation says "its good to know your numbers". 
Feeling confused, frustrated and worried.
Confused!
Shaking and joint pain.
Urso and rapid weight gain
Diagnosed a week ago today
