Newly diagnosed PBC

[lizzybeebee2003]

Hi, I have just been diagnosed and feel very scared when I read all the information. Currently I feel fine (although I have considerable abdominal discomfort). I saw a specialist a few weeks ago and she told me PBC was a 'minor inconvenience'. I'm so confused. Why is this so different from everything I've read? Are there many people for whom it is just an inconvenience?? And is there a chance it will never become problematic? I'd really appreciate other people's thoughts and experiences. Thanks

[Hidden]

Hi

There is no clear cut answer to how PBC will affect anyone as it varies . I think your specialist is very flippant in their remark. Some people don’t really have any symptoms and others find symptoms debilitating .

Welcome to the forum 😁 x

[lizzybeebee2003 in reply to Hidden]

Thanks so much. I'm only young and not knowing how the future is going to be is very hard

[ENuk in reply to lizzybeebee2003]

Hi, it is an uncertain time when first diagnosed however time does help as you'll feel more confident. Your Dr should not have been so dismissive.

I was diagnosed 2 years ago and my levels were quite high but I have responded well to Urso and my blood levels are within normal range. Over that time I have felt happier that the condition is manageable. Thankfully Urso is available and it is likely that over the years there will be other treatments. There are lots of reasons to feel positive but it is natural to feel shocked when first diagnosed.

I still suffer with fatigue which seems to be a common symptom and Urso doesn't help with that.

PBC is often common with other autoimmune conditions so if you have any other symptoms it is worth discussing with your GP so you can be referred. I have sjogrens as well.

Good luck

[AyrshireK]

I am guessing that your 'specialist' is not perhaps a hepatologist because surely one of them isn't going to fob you off as they have.

The British Liver Trust perhaps has some of the most reliable information on PBC ( britishlivertrust.org.uk/in... ) and if you haven't already found it yet the PBC Foundation has it's own forum here on Health Unlocked where you will find many other PBC patients and can share information and support with them healthunlocked.com/pbc-foun...

Whilst you are young it would be wise to try and get on with life without fretting the what ifs of what the future might hold but definitely educate yourself about the condition so you can steer future clinic appointments and get appropriate treatment.

Hope the links above help.

Katie

[lizzybeebee2003 in reply to AyrshireK]

Thankyou so much. I will have a look

[Blackcat26]

Hi lizzybeebee, I’m newly diagnosed in August this year and I’ve got to say Ive found the information overwhelming and scary. I think the PBC Foundation has been brilliant so far in the support they’ve given. I’ve signed up and also spoken to the helpline and they had so much time to help explain things in simple terms. In fact until I rang them I’d not had anyone tell me actually what it was. Are you taking urso? I have good and bad days with coming to terms with it, sometimes I cry and everything reminds me that I have this condition. There’s a lot to take on board and I myself hoped to speak to someone in the same position as me, so do feel free to get in touch. I’m not really sure how this forum works and if you can private message I’d be happy to chat xx

As the others have said I think arming yourself with knowledge and questions when you see your consultant and taking ownership of your own journey is the best way.

Best wishes to you x

[Sydgal]

Hi Lizzy,I was diagnosed about a year ago, I was considered quite young to have PBC , i totally understand how you are feeling as I felt the same, especially when most doctors don’t know anything about the disease.

Please have a look at PBC Foundation they are full of very helpful information and tips for us PBCers, it all free aswell.

PBC Foundation helped me alot, it made me feel less lonely about this disease.

🙂

[Hidden]

Hi,Firstly I think your specialist was wrong to make that comment, being diagnosed with anything changes at least some aspects of your life and PBC is no different. I never had to take medication before I was diagnosed and now here I am on two separate medicines just to try and help my liver, I’ve altered my diet so I consume less fat and sugar, and have to have 6 monthly blood tests and hospital appointments, for me and many others it’s more than a ‘minor inconvenience’, particularly if you are really suffering with the itch and fatigue.

Anyway, unfortunately no one is able to say whether or not it will become a problem in the future and it is a progressive disease, but the good news is that it is usually very slow to progress and if you respond well to Urso you may never have any further issues with it, you won’t know if you are responding well for some time yet as they like you to be taking urso for a year and then they decide if you need further medication.

I was 33 when diagnosed (I’m now 36) so on the younger side of things and it was incredibly scary at the time, the dr who told me had not heard of it since medical school 30 years previous so she couldn’t give me any information about it, all I had was the NHS website information which isn’t all that positive, until I found the PBC Foundation, their website and app are great and I’d highly recommend you get all your information from them rather than dr google!

For me one of the most isolating things is not knowing anyone else who has it, but it’s been a few years now and the scariness has worn off, and it will for you, every now and then I think about it but it’s just become part of life now. If you want to chat further please don’t hesitate to get in touch x

[lizzybeebee2003]

Thankyou everyone for your comments, they've been really helpful. I'm seeing the specialist again in a couple of weeks so will challenge her about what she said I think. Really nice to know I'm not alone. Best wishes to you all

[Hidden in reply to lizzybeebee2003]

It would help if I had given you the link to the charter!

britishlivertrust.org.uk/li...

[Hidden]

Good morning and welcome to the forum. I am glad to see you have had some very helpful and informative responses. The only thing I would add is that it could be helpful for you to have a look at the Patient Charter on our website. This talks about what you should expect from your care and at the end there are suggestions for questions to ask your medical team.

regards