I’m new here

[kast18]

I was diagnosed today and was surprised my specialist doesn't want to see me until next year. I will be starting Urso tomorrow. Is sit normal not to be seen sooner? Basically any info I have found is on here was not really told anything at my appointment today

[Skypony]

Hi kast18, welcome! Sorry you had to join our club, but there’s lots of support here for you, and from the excellent PBC Foundation.

One of the good practice guidelines is that you should be followed up to see whether you’re responding to Urso, and therefore a year’s too long. Possibly your GP’s going to monitor your response, but still this seems a bit unusual for a new patient. I’d have expected a recall a few months later.

You can ask the Foundation for their ‘manual’ which has detailed and trustworthy information, but it’s a shame you’ve been left feeling unsupported - that shouldn’t happen. If you feel you want to, you could ask to be referred elsewhere, or simply request a follow-up appointment for three months’ time. Best wishes

[kast18 in reply to Skypony]

Hi thanks for your reply going to see my GP, Just overwhelmed and don't now what to ask or where to start. Like most I am sure it's a scary thing to know you have and then you google and get even more worried

[Karaxxx]

Hi & welcome. I was diagnosed in March this year & was started on Urso straight away. I have been monitored every couple of months at the hospital & have been having 6-8 weekly blood tests since diagnosis. I’ve had some teething problems with the urso so my consultant has been tweaking my dose & adding other medications to counteract problems the urso has caused me. Basically it’s made me itch really bad. I couldn’t have carried on & waited a year with that! He’s given me other medication, lowered my dose & is still trying to find a balance & I am 6 months down the line. so I do think it is important that you at least have a follow up say 3 months after starting it. (Mine was 6weeks) I imagine that when they’ve got my levels stable I won’t have to go so often. However I agree with Skypony it does seem a little odd that they don’t want to see you for a year. I assume you will be having your blood levels monitored regularly? I would expect that at least to make sure you are a responder, that you are on the correct dose etc. I hope this helps & good luck 😊

[kast18 in reply to Karaxxx]

My GP called me today and she wasn't happy. She asked if he referred me for a scan - No- at this stage I don't even know what they scan for.. so going to see her and she was going to refer me to a different specialist

[ninjagirlwebb in reply to kast18]

There are 2 scans that they might do:

1) liver sonogram - to see the structure of it & if there is anything abnormal

2) fibroscan - measures the elasticity or how stiff the liver is. A normal liver would be less coarse or grainy. But mostly the fibroscan is done after they have established the fact that you have a liver issue.

[ninjagirlwebb]

I am in the US & I see my hepatologist quarterly.

I saw him more often when I was first diagnosed since I needed him to explain everything to me in detail. After I accepted that I had pbc, I basically read every medical journal on pbc & then went back to him with all my questions. This was after him already explaining things to me upon diagnosis. But I was frazzled in the early days.

Now I am more efficient. Before every appointment, I send him an agenda/questions via a patient portal & we discuss each item when I see him.

[kast18 in reply to ninjagirlwebb]

I am so overwhelmed I don't know even where to start with what to ask

[ninjagirlwebb in reply to kast18]

It is very hard. Did you join the pbc foundation? They have a phamplet explaining pbc & a list of questions you can ask. Hope that helps.

Here is one of the medical journals I read about pbc.

Basically I used what I read & ask the questions of things I was concerned about or didn’t understand fully. It is not easy reading though.

aasld.org/sites/default/fil...

[kingsnorth]

Morning kast18 I was diagnosed in February 2018 and put on URSO l initially saw my consultant six monthly but as my bloods became within normal range almost straight away l now see my consultant yearly. I ask my gp to give me 6 monthly blood tests which she is happy to do. I think the NICE guidelines say that if you are on URSO you must initially have 3 monthly blood tests, if I’m wrong then please somebody correct me. I don’t know why you initially saw a consultant but other things such as a bone should be undertaken

[Candy12]

pbcfoundation.org.uk/

Welcome, I think the best place for you to start your journey with PBC would be to contact the pbc foundation, at the above link.

Call them and have a chat the details are also on this page , on the menu at the top click .. About... or click on the pinned post from Robert .

They will help guide you on what to do, a year does sound a long time if you’ve only just been diagnosed.

[Cressy]

Morning Kast18, I wonder if it depends on what stage you are at. Although we don't do stages in the UK, depending on the progress of the disease would warrant your treatment. I was diagnosed in 2013, symptom free and put on Urso. I see my consultant every 2 years and my GP does blood tests every year.

[cazer]

Yes you may have appts far apart as it can a very slowly progressing disease..

Your gp can see you in between but if you have any problems that the gp is not sure about they send you to the consultant sooner or contact them for advice.

Just make sure you ask any questions you may have and if the gp doesn't know they will ask consultant.

Best to go on the pbc foundation and join... Its really good for information.

Are you symptom less at the moment?

Best wishes cazer

[kast18 in reply to cazer]

I don't have any symptoms and was diagnosed by accident. I am just so overwhelmed

[shared in reply to kast18]

you must have had some markers or elevated liver enzymes. Best to find out . Do calm down and allow yourself some time to adjust. Things will work out.

[cazer]

If you are concerned ring the consultants secretary and voice your concerns... They have the consults ear so you can get feed back that way x

[iagra]

After I was diagnosed with PBC, I was immediately put on URSO. The first 1.5 years, I did the labs every three months and ultrasound every six months. The following years, I did labs twice a year and ultrasound once a year. I see my doctor once a year or as needed. But, the first year, I saw her several times, after the labs to go over results.

[kimphoebe]

Hi there, sorry to hear that you have pbc. A year does seem a long time, when I was first dx I went to the hospital for bloods every 2 weeks but I think that might have been because they thought I had a overlap with another condition. Even now 7 years later still go every 3 months as I’m classed as a nonreponder to the uso. I’m now on a clinical trial so there is loads of new meds being tried at the moment. There are certain guild lines which should be followed after a pbc dx.

[pottery1]

Hi. I was diagnosed about 18 months ago as very early stage pbc. I had a fibro scan and bone density scan and prescribed ursodeoxycholic acid and vit D. Due to early stages I didn't have to take meds but I chose to. My next app with consultant was 12 months on. The consultant is excellent in the field of pbc so I have no doubts. Maybe you are very early stages like me . Hope this is helpful x

[Sandymh]

Hi. I'm shocked that you won't be seen for a year. I was diagnosed November 2010 and was seen every month or two for a very long time, then every three months. It's only this year that my appointments have changed to four monthly. I hope you will get seen much sooner. It's unfair to leave you so long, when you need reassurance, and to know more about your condition. Hopefully you will stay well, as not everyone suffers severely with PBC. Best wishes and good luck.

[JaniceK]

Hi Kast18, welcome to the site, I am not on it a lot, but do like to pop in and out. I was diagnosed in 2004 with PBC and only saw my consultant on an annual basis and was prescribed Urso. I took unwell 18 months ago with severe heart burn I thought I was having a heart attack, and referred to have a routine endoscopy for a scope where they discovered I had some red varices, however, since then my consultant now does all my scopes as they require to be banded. In June this year I was sitting at a band 4 (which is the highest - they do grade varices from 1-4) I was then seen within 2-4 weeks and they had come down to band 2 and I had 3 varices which required banding. Currently I am being seen within 4-6 months in order that they don't bleed out. I had my annual clinic appointment at the beginning of September and was reassured by the consultant I was doing well, it is the varices that are the issue, my biliary ducts in the liver are blocked so blood flow has to go somewhere, hence I have portal hypertension in the stomach and then the varices as the blood has to go somewhere (if that makes sense)

Like you I was terrified as people think you look well, but cannot see the mental and physical side of this illness and a lot of people do not understand it. I am happy now as I asked lots of questions, I took a list with me and as the consultant answered I wrote down the answer for my husband and family as well as work colleagues to understand it. The consultant assured both my husband and I at my last appointment not to worry he is on the situation.

I hope this helps, my name is Janice if you wish to private message me and I live in Ayrshire.

[KevinHall10_ in reply to JaniceK]

How far along are you in pbc?

[KevinHall10_ in reply to KevinHall10_]

Just worried about varices. I am in stage 2..

[cazer]

Okay kast... Take a deep breath... And think on this... You are the same person today as you were yesterday... You don't need to do anything straight away... Just let it sink in... You will be fine... The information will get to you in time.

It sounds as if you are in good hands with your gp... So let her take on the task for now... It will all come out in the wash..

There is no rush for scans etc... There is probably nothing to see if you are at very early stages.

I was only referred because I had just had glandular fever and a premature baby..

My local consultant wanted me referred to his friend in qe... And I was keen to know more about it.. But I think otherwise it would have been much later on.

Please try not to worry.. Easier said than done I know but you will be okay...very best wishes xx

[liver-bird]

Hi Kast18,

sorry to hear you were told so little. Please join PBC Foundation and get reliable info from them. Also, Livernorth have an excellent informative DVD on PBC which is free of charge.

Next year is only 3 months away so perhaps it was the intention to see you early 2020 but if you don't hear, phone the Consultants secretary and ask for an appointment. Someone should be monitoring your response to urso via blood test as it works for most but not all of us.

Keep in touch with this supportive group which has a wealth of experience and lots of understanding of your feelings. Big hug Diane

[kast18 in reply to liver-bird]

thanks Diane . Yes it is next year end of February not a whole year. I was just concerned that they are putting me on medication and not following up sooner and as I had never heard of PBC until yesterday I would like to ask a few questions (once I get over the shock) Karen x

[KevinHall10_ in reply to kast18]

Hi Karen, you just got me thinking, i haven't seen my liver Dr. in a while. I'm going to call him today and make an appt. I still don't quite understand all the ins and outs of this disease, but i just read alot and read what the people say on here. I love this site. Welcome in a nice way...patxxx

[mrspeffer2]

Good morning....Wow! it's a huge surprise to get this diagnosis. Although each one of us have heard those very words, it does not soften the blow and your experience with it. I am truly miffed at the medical complex and their thought process. You stated the the diagnosis was by accident. What specialty of medicine diagnosed you and on what criteria? I remember doctors doing all sorts of other tests on me to see what was causing my elevated liver function tests. After 4 years of periodic testing, I was told that PBC was suspected.

I was diagnosed via biopsy. Urso was new on the market, having been FDA approved in 1997, with no real track record, so I was not prescribed. My numbers stayed at their high normal for a few years. When they started to climb, I was prescribed URSO, but soon found out that I cannot tolerate the drug. That was over 22 years ago. Still here, still active and mostly symptom free. I think your GP has the right idea to refer you to another specialist. I'd push for a Hepatologist, not a Gastro. I wish you the best in your journey, Stay with us...this forum has brought me great connections with people near and far. Most people here are wonderful and full of compassion. Be well

[Max53]

Hi I was diagnosed in July out of the blue and I have been asked to do 2 monthly lfts and a follow up with my consultant in 6 months. Had ultrasound (normal) whatever that means, last lfts came back normal but I would ask WHAT time next year as March puts you around 6 months, people on here know more than me but I think this is about right to see if you're ok on Urso.. (but not to decideif you are a responder) think that is 12 months, best wishes

[Hidden]

Hiya,

I had very similar feelings when I was diagnosed, I was pregnant at the time and couldn’t see a hepatologist until after my baby was born, I was diagnosed in May 2018, baby was due September but had to come early in July due to the PBC. I first saw my consultant in the August 2018,he said that he wanted me to have a full year on the urso to see how I respond but he also referred me for a fibroscan and an ultrasound which I had later in the autumn. I saw him again January 2019 to check blood results were moving in the right direction and discuss what the fibroscan results meant for me. I saw him again August 2019, the blood results hadn’t come down enough so he’s allowing me 6 more months on the urso to see if my bloods come down more, next time I see him will be January next year and then we will discuss other options if bloods still aren’t moving in the right direction fast enough.

As you can see from my timeline PBC and all the appointments are quite slow coming. If I were in your shoes I would get an appointment with my gp, ask them to explain the disease and get a print out of your blood results, it’s important to know your own liver enzyme levels and understand what they all mean. A lot of us are just given the diagnosis and then left to it, it is up to us to become well informed and joining PBC foundation is one of the best things you can do to help yourself.

All the best x