Follow up appointments

[Lucylongstockings]

I was diagnosed with pbc in January and am due a follow up appointment at the end of August. Does anyone know what I should be expect/ what's best practice? I started on urso at the end of January, but my gastro didn't arrange any follow up blood tests. I just took the medication leaflet to my GP who followed me up,with monthly blood tests for 3 months and then another blood test at 6 months. I seem to remember that I should have bloods done every 6 months and an ultrasound every 6 months? Does anyone have a fibroscan, I've read that this shows cirrhosis more clearly than an ordinary ultrasound scan. I feel I should go in armed with all the information I can p. I don't have much faith in the doctor.

[Hidden]

Hello Lucylongstockungs.

I was diagnosed with PBC Dec 2010 following my first visit to the hospital consultant in the beginning of Nov 2010. He relayed the diagnosis to the GP who then asked me to go in, tell me the antibodies results and give me urso. He then said the hospital would forward out another appt for me tor eturn which I got for Feb 2011.

I had been on urso 2mths at the time when I returned. I found the system of booking in, seeing a nurse for blood pressure, weigh, etc and then another area to wait for the consultant and then I had bloods taken prior to being asked to make a further appt for what the consultant had recommended. He did recommend 3mths but I bartered for 6mths so he gave me a blood envelope with details he wrote on for the GP to take at the 3mths mark.

Basically that is more than likely how your first appt following diagnosis will be under the NHS. I presume you are in the UK. If so, I don't think ultrasound is done every 6mths, perhaps not every 12mths either. I think a lot depends on how the LFTs (liver function test) is going. If it starts to decrease with urso then I can't see much for near future visits except for a brief chat and the bloods. Your GP can undertake LFTs (and FBC, the full blood count) in-between hospital visits so the consultant has the results to hand on your return.

Now for me my LFTs did start to drop, so much so that when I returned to the consultant Oct 2011 almost a year after taking urso and diagnosed I told him for now I do not want to return for any visits as to me it was a waste of getting to and from for what happened when I got there. I felt I could easily have the bloods done at the GP and that is what I have done since Oct 2011. My bloods are better now than they have been for a long time (had repeats early July). If the GP thinks your LFTs are rising like mine did over 6mths then you will be asked to have them done in a shorter span as I did every 3mths for 2yrs. Last yr I was requested by a new GP that looking at the bloods since early 2011 and the fact that mine seem to go up a bit, up a bit more and then come down and down and then up a bit (make a wavy line on a graph they would!) every 6mths for now would suffice.

Fibroscans on the NHS aren't readily available everywhere as yet but more than likely will be in the future. An ultrasound can actually tell a lot about the liver area, mine showed me to have a pretty normal looking liver back in 2010.

I think if you had cirrhosis you'd certainly have been informed by now by your gastro so I'd not be worrying there. I think it takes time for it all to sink in and it is only passing time that makes you relax a bit more. I resolved long since with myself that I'd crack on with life (I am now 50) the best way I could, deal with anything as it comes along as after all PBC is said to be something that the majority of us will die of but not the cause of it being our demise. Stages of PBC can be very prolonged, some never reach a cirrhotic stage and to me there's really no use worrying about something that might happen when it might never do.

Me neither has no faith in doctors due to experiences in the past with my late first husband but I try to take notice of myself, what is happening, find out things and question a doctor as and when I can. Unfortunately the new GP I registered with 18mths ago now, she seems a bit of a panicker and I am sure she'd want me to return to the hospital if my bloods started going uphill (the wrong way) but I think myself I really know how I feel. Good Luck.

[Bogindour]

Follow ups generally involve chatting about symptoms, blood work and medication levels.

There are loads of derivatives of Urso out there, and some people find they don't tolerate one particular brand very well I'm now taking destolit but have been on urdofalk and ursogal previously.

Ultrasounds are great for determining inflammation levels within the liver and bile ducts and are quick and pain free. If anything untoward shows up you'll probably be scheduled for an MRI or biopsy.

I was diagnosed in 2006 and used to see my consultant regularly and have bloods done every month, now with things being a little more normal (blood wise) I'm down to 18 month visits to the consultant and 6 monthly blood tests.

I am however on hepatoma surveillance as we are recognised as being at an increased risk of cancer.... This is alternate six monthly ultrasounds and MRI scans.

Dave

[GrittyReads]

If you have not already contacted the PBC Foundation (link at the top of this page), then I think it would be a good idea to have a look at their site, read all their info on PBC, and then make a note of any questions and phone up and talk to one of their advisors. They are great and very helpful.

Also, you have a right to have a copy of all letters between consultants, radiographers, gastros, etc and your GP - then if a consultant is recommending ... monthly, 6 monthly checks, but you GP isn't doing them ... you would know! Also, you have a right to have a printout of all blood test results from you GP. You have to ask, and they may charge a small fee (mine don't), but once you've got them you can chart any changes. Once you have learned all about liver function tests (lfts) from the PBC F info folder/site, you can see if the urso is helping to stabilise your lfts, month by month.

[I personally think you/we should always know the exact criteria of our diagnoses.]

PBC is quite variable, so we can often only answer based on our own experiences, which may not tally with yours: this is why you will feel more secure if you gat a factual overview of the whole condition from the PBC Foundation (don't read too much of the Googled online stuff, as much is out of date, or alarmist rubblish*.

NB Peer-reviewed, academic/medical papers, which are published in reputable medical journals are okay* (if you can understand them - I was an academic and I struggle with medical papers). Sadly, in the UK it's very difficult to get access to such papers unless you belong to an institution such as a University or a Research hospital, etc. PubMed is an exception.

Also, a lot of what we all say on here is just our opinion [although if I quote an expert, a research paper, or what someone else has said 'as a fact', then I will say so, and it won't be just my opinion].