Hi I was diagnosed with PBC early last year. I've not had a biopsy as other health conditions mean I'm unable to remain still for the amount of time required.
My consultant appointments are sporadic to say the least. He wanted to see me in Dec 2014. However, my appointment is scheduled for May 14th!!
I'm unsure if I should take notice of my diagnosis and change lifestyle accordingly or remain as I am..... My consultant doesn't appear to have any urgency. What support (if any) should I be searching for?
Any help, hints or advice will be greatly appreciated
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Mares46
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I was also dx early last year. Jan 9th a day I will never forgot.
The specialist who dx me was useless. He told me I had this and it could lead to liver cancer here is the Pbc foundations website, here is a letter for your Dr. Good bye! I was flabbergasted! I had my 18 year old daughter with me also and thank goodness I did. I fell to pieces in the car. Cried for a long time. I didn't know what to do. Finally my dr orders urso acid and he has been great. I have a ultra sound and blood work every six months to keep check on my liver.
I am requesting to see a specialist in Cambridge as there are so many questions he can not answer as a Military Dr. I tell him more and we have just plodded along.
What I have done since dx is reduce white carbs and gone to low fat. Helps our livers digest better. Also I take a multi vitamin and B, D and calcium. Also zinc and magnesium.
Are you on urso yet? Are they putting you on it?
Big hugs and thank God for groups like this. I have so many Pbc friends now. Blessed.
I've been diagnosed just over a year. I saw consultant Dec & will see him annually. GPS great does bloods when I'm rough & on urso. Got all my info from the foundation who have been brilliant. I've had no biopsy but don't feel I need one after my research. I've like you had the worries & sleepless nights but I feel I'm in a good place now. Register on the foundation web site as a member there's loads of info & they're really good at dealing with your questions. Xxx
There is also a dvd that is sent free of charge all about PBC that is available from Liver North. I'll pop the website on. (I never watched it all, my husband did though.)
Like the PBC Foundation, you can also subscribe for their newsletter to be emailed to you or you can also read them online as they are available as are the back issues. They seem to feature a lot on PBC.
Welcome to the site although none of us want to be on it and not have PBC...
....I was asked back to the hospital 6mths after I saw him on my first consultation following diagnosis Dec 2010. I first saw him beginning of November 2010 and that day he asked me allsorts of questions, said the scan I had July that year looked pretty much normal and then he said he would take some special antibodies blood tests that day. (I originally went to my GP March 2010 with itching.) I had heard about PBC months before so I asked him. He said that one would be for PBC but there was also others. I know I had the ANA that day and forgets anymore at the moment. My ANA was negative, my AMA antibodies was positive for diagnosis. The consultant wrote to my GP asking him to inform me and then prescribe urso and that he would see me in due course. I received a further hospital appointment which was 2 months after starting the urso. I then saw him 6 months later.
I never had a biopsy as I fit the criteria for diagnosis. Here in the UK we don't have a biopsy unless there is any doubt as to a diagnosis. If you are diagnosed and haven't maybe you are in the States where it seems the norm to have biopsy. On the NHS it isn't normal but then again I suppose that could vary from region to region. My consultant didn't deem one necessary. It was the GP prior to me seeing the consultant for the first time who said I'd have a biopsy to which I told him I might not do (he didn't know much about PBC as I found and he was quite new to being a GP. I'm not registered with this GP anymore). I have no desire to have a biopsy as at the end of the day all it will show is that I definitely have PBC but it isn't from a medical point of view which a lot of doctors state, a definite for staging as the liver is a large organ and only a certain site is used for biopsy. It won't change treatment so I cannot see the point nor do I want to know of any stages for myself, I go with how I feel, confident that the bloods can show changes as in them going more abnormal and also scans can show a lot.
It took me some time to realise that I did in fact have something that would not go away. Back in 2010 I just thought I was over-worked, over-stressed and running around too much in a full-time managerial job as I was only 45 when I started itching (46 when diagnosed). I still thought for some time after that it would just go away but slowly I accepted I have to take tablets for the remainder of life apparently and also I've found the itching hasn't vanished, it has altered somewhat to confined to night time but I decided to crack on with life, live it and enjoy it as you never know.
I think when a consultant looks at your blood results and scan and your general appearance then he/she makes a decision more than likely as to how you are with PBC and that is more than likely why the appointment you received is in 6 months. Take it from me 6 months isn't an awful long time really. I was having bloods done pretty much from diagnosis at 3 monthly intervals but beginning of 2014 the GP said that she would switch to 6 monthly bloods as the consultant originally wrote unless any problems. The GP had stuck me to 3 months due to the HB being one below normal and also I did have a slight issue with the iron (ferrritin) levels end of 2013 but I've now been having them every 6 months for the last 3 blood checks.
I asked about dietary when I saw the consultant before and just after diagnosis and he just said to me 'the liver likes calories' and just eat as normal. I think alcohol is common sense. I chose not to bother after my first abnormal bloods March 2010 but I was never much of a drinker anyway so I have to say I don't miss or crave it. I continue a sensible diet as I think although stuck with PBC by keeping myself as healthy as I can still it might just stave off anything else going wrong. I think the PBC and itching is enough for me. I avoid artificial additives if possible, sweeteners and also MSG for instance. I try to make my food from scratch and then I know what I am making. I have 2 cups of coffee a day as coffee is said to be good for the liver but not in excess. I tend to switch to red tea early evening (only have 2 maximum if that) and that's caffeine-free. I don't actually eat anything following my evening meal So far I am doing well and been itching now over 5yrs but diagnosed over 4yrs.
Hi mares46 it sounds as if you are leading a fairly normal life. I'm sure I had pbc for at least 15 years before I had any serious symptoms and then it was because I'd had glandular fever amd was pregnant at the same time as it had knocked on the condition by quite a lot of years.also my gp had a lady of 70 who was just diagnosed but had very mild symptoms. ...so I suppose what im trying to say is that ...its how long is a piece of string with pbc.people can have mild symptoms and stay like that and someone else might have bad symptoms and progress quickly or vice versa!
So my advice would be to look after your self...eat fairly heathily smaller portions but a bit more often.not too much fat but a bit when you fancy it. Probably a multi vitamin as we don't absorb a.e.d. and k.very well (check with doc) enjoy life rather than worrying about what might happen ...as it might not.exercize won't do any harm and is good to keep up muscle strength and fitness. Live life to the full as the worst thing is probably the unpredictability long term but not worth worrying over...oh one other thing if you have other problems don't be tempted to blame them on pbc...go to docs as could be unrelated. I made that mistake blamed upper tummy pain on liver/spleen and it turned out to be undiagnosed stomach ulcers. So live life to the full as best you can and enjoy. That probably seems difficult at the moment but try not to let it take over.x good luck
I would agree with what Cazer has advised and I would just emphasis the importance of keeping as fit as possible through exercise and diet. I had a transplant 6 months ago after being diagnosed with PBC in 2012. It was difficult to undertake much exercise because of extreme tiredness but thankfully the Consultants I saw kept repeating to me the need to keep as well as possible. Good advice.
So sorry you are having to go through this. You will get a lot of support on here, and from the PBC foundation: do join them if you have not already. There is a link to their site at the top of this page, where you will also find info on PBC, and the number to phone their advisors.
I agree with everything that everyone has said on here. It's a great shame you are having to wait to see the consultant, and I would follow any channel to speed things up. But meanwhile, the best course is to follow some of the diet, exercise, and healthy living advice that folk have suggested. I would also suggest not having alcohol, but it was easy for me.
Can I ask what tests the Drs have done so far, and what results you have been given? Also, what (if any) symptoms did you/ do you have? One of the problems with PBC is that we are all so different - but it also seems that a lot of the Medics have very different responses to us all. Even people with exactly the same test results and symptoms (or lack of them) can get very different responses from both GPs and consultants. Also what did they say in response, have they explained much about the condition? Have they put you on urso, or are you expected to wait to see the Consultant first?
Try to stay calm, and don't worry. Enjoy life, spoil yourself, and make sure you are having fun. Beating stress is one of the best ways to treat most conditions, especially autoimmune conditions.
I am so sorry for all your difficulties. Here is the advice I have received. Ursodiol is essential for treatment. Hydroxyzine is the most helpful medication for itching. Tyrosine may be helpful for energy. Take also vitamins A, D, E, K (K only if a blood test called a prothrombin time is elevated). This website has been helpful for me to just connect with others who have and understand the problem. Diet is mostly eating a healthful lifestyle, avoid fats as much as possible and not large sugar loads. I believe it also requires patience and understanding of our bodies since they just cannot work as well as previously. If you have a problem with muscle twitching, that is common with liver problems. Mine improved very much after being on ursodiol. Modafinil is a medication which can be helpful in treating the fatigue. I could not tolerate it. I also have an associated problem called autonomic dysfunction which means for one thing that I have low blood pressure and cannot tolerate some medications.
If you are taking ursodiol, there is not a lot of urgency since that is the mainstay of treatment. You do need to know what stage of liver failure you have and the doctor can calculate that with a formula using the blood tests. A biopsy is helpful for confirmation. The good news is that with ursodiol most people respond and a person with stage 1 or 2 liver cirrhosis can live out a normal life span.
I hope this is helpful. If you have other questons I would be happy to help as much as I can.
I can say that a year ago when I first started with the symptoms, it was difficult for me to get out of bed. Now I am about to start back to work at least part time for which I am very happy. Good luck and God bless you.
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