Just been diagnosed with PBC frustration with doctors! Had my diagnosis confirmed over the phone 8 days ago and don’t feel supported

[Maui02]

As newly diagnosed should I have a medical review every 12 weeks?

[Annac]

Hi, Horrid for you ! firstly who told you ? GP. ? Consultant? Are you under a hospital? You must have many questions and be feeling a little frightened.

So go and ask that medical professional to give you an idea of how they intend you to go forward from here.

I was diagnosed with PBC 15/16 years ago and have so far had a successful control of PBC

since then. This forum will give you information once people click in to your questions.

I take Ursodeoxycolic Acid every day - in a capsule form. There have been hiccups on the way and other medications have been tried along side Urso.

You really need to speak with a Liver Specialist/Hepatology Dept. Gps seem to have limited if any knowledge of the condition.

This may not be very helpful - but push for more advice and support from the "professionals" so that you understand.

[Buddy2017]

When I was diagnosed 11 years ago I saw the Consultant every 6 months and had an ultra sound and blood test at the same time . Gradually that changed to once a year and to be perfectly honest that suits me better as I find going to the hospital a waste of time ...you get weighed , see the doc and asked how you are ( and if you get a junior doc who knows nothing about PBC asked if you have stopped drinking !!!!!!! ) Your best bet is to join pbcfoundation.org.uk/ who will send you all the information you need . I presume you have been given Urso so I would have thought you would have another appointment in 6 months to see if the Urso is working and how you were feeling . Good luck

[Saints1976]

I know how you feel was diagnosed over the phone a year ago and all my appointments have been over the phone since.Was put on urso straight away but not really told much about the condition until told about the pbc foundation which you can download and are so informative about this condition. Speak to your doctor and consultant write down questions as you think of things and don’t be fobbed off that’s what I’ve been doing. Good luck

[Bsb1981]

Hi, I was diagnosed in September last year over the phone with a consultant, it was a very quick call, was prescribed Urso and was told I would have a appointments every 6 months. They also booked me in for an MRCP which was about 5 week later.

I did follow up with the consultant after a few weeks via email, after reading the Urso leaflet and pushed to have another blood test at 4 weeks which my consultant agreed to. They called me about 8 weeks after my first call and said the medication is working, the MRCP showed the liver is fine and I will be seen again in 6 months, I am waiting for this appointment at the moment.

I would email the consultant if you have further questions in the meantime, they have got back to me and it’s helped.

The PBC foundation have been a great source of information and support, as well as the Facebook groups and this site. They do question and answer sessions on the Facebook PBC foundation with Specialist Consultants and that has been an amazing support. They can guide you to make sure you ask your Consultant the right questions too.

I am no longer in shock and scared about the future. I just take my pills each day and try to forget about it.

I hope this is useful to you, take care

[butterflyEi]

Hi Maui02 and welcome to the group. Sorry you have to be here and although it is a shock it is good that you have your diagnosis. I am going to assume that you have been prescribed Ursodeoxycholic Acid at the right dose according to your weight.

As Buddy2017 has said join the PBC Foundation for the most up to date accurate information. If you email [e-mail] she can send you a newly diagnosed pack. Also on a Thursday usually at 2 p.m. the PBC Foundation host a Q&A session with specialists in the field of PBC. This has been a wonderful resource for those of us with PBC who have been unable to see our specialists. These sessions are available on Facebook Live, search for PBC Foundation, scroll through and you will find back recordings, for a more private interaction you can join future Q&As through clickmeeting - link on the web site. The PBC Foundation also has an app which is very useful resource. Mine is loaded through PlayStore but I believe it is available for iphones as well.

I understand that it takes 6-12 months before specialists know whether the URSOdeoxycholic Acid works effectively, this can be seen in your blood tests (always ask for a copy of your results so you can build a picture over the years) so having a review after 12 weeks is probably a bit soon. If you are concerned then your GP may be able to order a blood draw for you and discuss your results. In most cases PBC is a slow progressive autoimmune disease giving us time to adjust to medication and improve. Fortunately and only recently there is now a second line treatment available called Obetacholic Acid (Ocaliva) - hope the spellings are correct!

Best to learn as much as you can from people such as the PBC Foundation as you will come across many in the professional field who are unaware of our uncommon autoimmune and can make some unwelcome comments, become your own advocate.

For myself I was diagnosed in 2006 probably had it for a good 10 years prior. I keep a record of any tests that I have and have a spread sheet to record my blood test results. I eat a healthy well balanced diet rich in vegetables and lost a bit of weight. Sugar and salt seem to be an enemy and for me also I find red meat more difficult to process nowadays. I usually have an interaction with the hepatologist once a year although I once went 5 years without any controls and during covid there was no availability.

If you decide to join the PBC Foundation it is free to subscribe but if you can make a donation it helps to keep them afloat as they receive no government funding. There are local meetings which of recent have been held on line. If you have one local to you it may help to meet up with others.

Well I think I have rather chattered on but I hope some of the above is useful to you.

best wishes

[gillrich]

Hi I was diagnosed 19 yeas ago the Pbcfoundation.org.uk is as already said the go to place for support and information . They will also if you wish tell you have to seek support from people like me one of 2 Nottingham and area volunteers for the foundation people you can meet on line and now face to face if your local area is doing so But saying thst you can going any group on line thro their click meetings again the foundation will support you

We are one big happy family you need never feel alone again ❤️

[ninjagirlwebb]

In the US which the medical system differs from the UK. I was diagnosed maybe 7 years ago via biopsy and was put on urso right away. I see my hepatologist (liver specialist) quarterly and he is accessible to me when I have questions via patient portal or phone when I need his guidance.

[Kakey]

I was diagnosed by phone 2 years ago, and have had little to no care. I don't know what we are supposed to have, but I totally understand feeling unsupported. I do get regular blood tests (by my GP), so that is something.

[ninjagirlwebb in reply to Kakey]

Maybe things will get back to normal in the UK for healthcare...I am thinking it could be slower/less attentive these past 2 years because of covid and the healthcare systems were overly stressed.

The hepatologist looks at alk phos to monitor the pbc. There is also a bunch of tests that he orders from time to time to manage the condition. List below is what my hepatologist does for me:

1) Quarterly comprehensive blood panel (this includes the liver tests), cholesterol tests, vitamin D test, blood and platelets count test, every now and then he tests the TSH (thyroid function)

2) Bone Density tests every few years, he did one when I was first diagnosed because it serves as a baseline for comparison. He told me pbc patients are more suspectible to bone loss issues

3) Sonogram (looks at the liver structure etc), fibroscan (measures liver elasticity) every few years

At my appointments he reviews my trends, asks me how I feel, reviews the meds I am taking and answers my questions.

[Kakey in reply to ninjagirlwebb]

Thank you so much. You are fortunate, your care sounds great.

[ninjagirlwebb in reply to Kakey]

My doctor is really exceptional; I tell him that every time I see him. And he tells me, it is easy to care for you because you ask questions, participate and follow medical advice.

Ask your GP to arrange for a consultation with a liver specialist at least once a year. Be persistent and they likely will arrange it for you. UK is opening back up so maybe will get easier to get the care.