Newly diagnosed with preclinical PBC - PBC Foundation

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Newly diagnosed with preclinical PBC

labootz16
labootz16

Just got a call yesterday from my gastroenterologist telling I have preclinical PBC and he set me up with an appointment to discuss treatment. I have a high AMA and briefly had high AST and ALT. Now they are at normal for 1 1/2 yrs, but my AMA is continually going up (now at 75.2 last). This is the first I have heard of preclinical, can anyone tell me what I should expect? I have had other symptoms, but not too severe. Don't know if I want to proceed with treatment after reading some negatives Help please!

53 Replies
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Have you joined the PBC Foundation, if you haven`t do it soon and get facts. Most of us have Urso which helps to slow down PBC. but there are some people that have problems with it and I wonder if this is the negative you refer to? One of the main problems with PBC is that everyone is affected in different ways and what works for one person or causes problems for them may not do the same for you. Wait and see what your specialist suggests in the way of treatment and bear this in mind .

labootz16
labootz16 in reply to Oidra

Thank you!

Hidden
Hidden

I'm in the UK and it doesn't appear to be the norm to keep having checks on the AMA (anti-mitochondrial antibodies). I only had a blood check for these (and ANA) just prior to diagnosis and have never had one since.

To me it wouldn't make any difference how they were, I was diagnosed with PBC and until along comes a cure I am stuck with PBC. I do think though that maybe a fluctuation in them might possible mean the PBC is slower or at a 'halt'.

I never had a biopsy for diagnosis nor after and I'd not have agreed to one if offered unless necessary to find out what was up if I couldn't have been diagnosed with PBC due to symptons and abnormal bloods. I don't go in for this staging of PBC and regardless won't make much of a difference. Symptons seem to be so varied regardless of how we are with the PBC it appears.

My blood work has never returned to normal since being diagnosed though it did start to drop well in early days but then slowed. I know if my bloods had returned to normal at some point I'd still be advised to take the urso. Never liked taking it as pre-2010 and being diagnosed I used to avoid any medications like the plague but over time I just get on with it.

I did have some initial side-effects but within a few months it all settled and since I've not really had any. I have found that if I take the urso in one go as opposed to twice a day it caused me to itch later morning when I tried taking all with breakfast and it does in my case cause heartburn so I stick with half of the daily dose with breakfast and the final just following evening meal and it seems to work best for me.

labootz16
labootz16 in reply to Hidden

Thank you

Hidden
Hidden

You need to be on urso to make sure the pbc does not progress & cause liver damage. The earlier you treat pbc, the better. Great that your doctor caught it early. Some people have it but doctors are not knowledgeable enough to identify as pbc. So treatment is delayed until another doctor catches it or symptoms occur.

labootz16
labootz16 in reply to Hidden

Do you have high lfts? Some say no treatment without high lfts and mine are normal at this time.

Hidden
Hidden in reply to labootz16

Mine fluctuated & they were slightly elevated & sometimes normal. I also had a biopsy done to diagnose it. Don't worry, it is good that you have it preclinical. Chances are it won't impact your life at all with proper care. You are going to be fine. My doctor told me stress makes any condition worse & told me that it was his job to worry about me. My job was to not stress & live a healthy lifestyle. Your doctor will take care of you.

As far as I am aware, there is no such 'official' diagnosis as 'preclinical PBC'.

If you just have AMAs, even AMA-M2 (there are different sub-types of AMA, that code for different autoimmune conditions, and AMA-M2 is the one most linked to PBC) this alone, does not mean you have PBC, even with symptoms - although they are an important guide.

You also need to have abnormal liver function (blood) tests, that are typical of PBC,

and/or a liver biopsy that shows PBC.

Contact the PBC foundation who host this site - link at top: email and phone contacts - and talk to their advisors. They recently produced an 8-page summary of the new 'official' guidelines to the diagnosis of PBC.

With just AMAs, you may have nothing, but if you have other tests to signal an alert, it needs checking carefully. You need to be checked for all autoimmune conditions, all the conditions linked to the other sub-types of AMA, and for all other possible liver conditions.

If you are only seeing a GI, it may be best to see a liver specialist, but talk to the 'PBC F' first, and get a copy of the diagnosis regulations.

Hope this helps.

Thank e

PS Until you have a 'formal/official' diagnosis of PBC - according to the official/formal diagnostic criteria - you should not be given Urso.

Gritty

Thank you

My hepatologist has started me on urso despite the fact i dont have a formal diagnosis i have probable diagnosis the liver doctor wants to see if my blood levels come down on urso

Hi , I’m pretty sure that pre clinical is when you are AMA positive but have no symptoms and your blood tests are normal, 🤔

labootz16
labootz16 in reply to Kate50

That is what I was told by one person and that's why I wasn't sure I should take urso especially since otbers have said no urso if no high lfts. Confused!!!!!

Kate50
Kate50 in reply to labootz16

Hello again, I would wait and see what the consultant says you should do, take care 🤗

labootz16
labootz16 in reply to Kate50

Thank you

Hidden
Hidden in reply to labootz16

I know it is hard but try not to stress until you discuss this with your GI. If he suggests urso, ask him why he believes this is necessary if your LFT's are normal. Have him give you the pros/cons. If you are still unconvinced, get a 2nd opinion from a Hepatologist.

labootz16
labootz16 in reply to Hidden

Thank you

Hidden
Hidden in reply to labootz16

Try to take a bubble bath or watch some movies to take your mind off this. Hope you have that appointment soon. Let us know how it goes. Maybe you don't have to take any meds & they will just monitor your liver enzymes on a regular basis. If it becomes high, then you go on urso. See what your GI says.

labootz16
labootz16 in reply to Hidden

Thank you again. My fatigue and other symptoms have become worse, but my lfts are at normal. I have wanted further testing to be sure it is PBC, but I can't seem to get in to any specialist or convince my doctor to do further blood tests to see if it is some other autoimmune disease. I know treatment for any autoimmune disease will help to slow the progression down, but I just want to be sure I am getting the right diagnosis and treatment for me. I guess I need to " go with the flow" as they say and just wait and see. 💙

Hidden
Hidden in reply to labootz16

You are doing the right thing. Unfortunately, all this autoimmune stuff is not all that black & white. You need to find a patient doctor who listens, does not dismiss your concerns & helps you along with diagnosing. When I first consulted with my Hepatologist, he drew me a diagram of all the possibilities of elevated LFTs & said we will investigate each one & figure out what it is. I was his last appointment on a Friday before a holiday. He told me, he didn't have any plans for the weekend so we can take as much time as we need. He talked to me for a entire hour. My point is that once you find a doctor that you have rapport with, all of this is easier to manage.

labootz16
labootz16 in reply to Hidden

Finding one seems to be the problem. Thanks for the advice. Best of luck with your treatment. God bless!

Hidden
Hidden in reply to labootz16

Try one of the teaching hospitals; they are at the forefront of care. Excellent talent. Take Care! You will be fine!!!

labootz16
labootz16 in reply to Hidden

U of M is a teaching hospital but on hold. I will be checking on other places since I am having problems with them. Thanks

GrittyReads
GrittyReads in reply to Kate50

As I've said, above, to labootz, there is no such 'official' diagnosis as 'pre-clinical PBC' (or pre-symptomatic PBC ... which is what a local liver consultant had 'labelled' me - and which caused havoc with insurance, as they would not accept it and only would cover me if I was treated as having PBC when I don't).

I saw one of the UK's leading PBC specialists and he overturned my diagnosis, so now I just explain I am AMA +ve. NB he stated, strongly, to me that AMAs alone are not enough for a diagnosis of PBC.

Some people just 'have' AMAs and never develop PBC. About 10% of blood donors are found to have AMAs, and of those, only about 1.5 - 2.0% of them go on to develop PBC. It has been known I have AMAs since 1992 - I've possibly had them all my life - and I just had annual lfts and checks, for years. I was always healthy, lfts fine, and no symptoms. It was only when a new-to-me GP, in a new area, panicked in 2007 and I was sent to a new liver consultant (not that familiar with PBC, and definitely not a PBC specialist) and he came up with the bogus diagnosis. It was after this I made a fuss, and eventually saw the PBC specialist.

The 'PBC Foundation' (who host this site on 'Health Unlocked' - see links above to talk to them via email or phone) recently produced an 8-page summary of a recent 'official document' covering Eu/UK/US, which sets out the official and formal criteria to be followed when diagnosing PBC. There need to be 2 out of 3 diagnostic criteria before PBC can be diagnosed. They are:

1 - abnormal levels in liver function tests, which are typical of PBC - and / or :

2 - the presence of AMAs (usually subtype AMA-M2) - and / or :

3 - a liver biopsy that shows micro-level damage to the biliary tubules of the liver that is consistent with PBC.

(NB symptoms may be a guide to PBC, but are not enough for a diagnosis)

Any 2 of these are enough for a diagnosis of PBC, but not 1 on its own, and definitely not just AMAs: - as I said above - some people just have AMAs. NB loads of people carry the RA autoimmune factor, but few of those go on to develop rheumatoid arthritis.

I hope this helps,

Gritty

I really appreciate your explanation, but my problem is also that I am feeling worse a d worse and would like to find out what the problem is. They aren't doing any other blood tests so I am stuck with this diagnosis. I have attempted to get in to a specialist at U of M and Mayo and have been told I am on a waiting list ( no appt. nothing). Any suggestions on getting some kind of help to get a correct definitive diagnosis?

Hi labootz, Sorry, my long post, above, was mainly aimed at Mops67 who was saying that the diagnosis 'pre-clinical PBC' was okay. According to all my reading and research, plus the recent 'official' guide to Medics on diagnosis (see the 'PBC Foundation' website for this), 'pre-clinical PBC' is not a recognised diagnosis.

Are you in the US? I am assuming you are ... Although the only Mayo I know is in Ireland! If you are in the States, I don't know what to suggest, as I really don't know how your health system works.

In the UK, you have a right to see any NHS Consultant anywhere in the UK - although many GPs may not tell their patients this. However, if your lfts are normal, but have been high recently, they should be retesting your bloods every so often. NB: the level of the AMAs is not supposed to be a factor.

They should be monitoring your bloods/lfts: especially as you have tiredness. It may be that the fatigue is just because you are under so much stress, but with the fatigue, as well, I think you have a right to demand more regular blood tests - maybe ask for a biopsy.

This is especially as, if you don't actually have PBC you should not be given the Urso medication, yet.

If you do develop PBC, Urso is the main initial treatment and makes a huge difference to most people and there is a new drug too, now to go with it.

I really would talk to the 'PBC Foundation' link at the top of the page with their heading. If you are in the UK they can give you exact advice and nearest good consultants etc. If you are in the US, they will be able to suggest a local support group who may be able to give better advice - there is a US based PBC Group ... ?I just can't remember what they are called.

Hope this helps.

Thank you

Yes, I am in the US and our medical system leaves something to be desired. Hoping to get some direction before my appointment December 19th ( earliest I could get inn to see the gastroenterologist). Thanks again.

Hidden
Hidden in reply to labootz16

Hope the gastroenterologist is also a Hepatologist? Otherwise you should also try to see a Hepatologist who is focused on liver disorders. My gastroenterologist recommended the Hepatologist to me because he didn't feel he was knowledgeable enough on the topic. I kept my GI as my primary doctor as he is also an internist.

PBCers.org is an online support group in Texas. I started to join but they have several things to get in. Seems you have to have passwords for all of them. I didn’t do it. pbc-society.ca is in Toronto,Ontario.

Thank you

Kate50
Kate50 in reply to GrittyReads

Hi grittyreads, first of all I don’t understand why you are aiming posts at me, I was only trying to show a bit of support to someone who is clearly worried and anxious about the possibility of having pbc, secondly while I am no expert I have suffered with pbc for about 20 years and have had every symptom and treatment available up to the point of liver transplant 2 years ago so I kinda know what I’m talking about, and there are 4 phases of pbc of which the first phase is pre clinical, the second asymptomatic, the third symptomatic and the fourth is advanced, these are well documented and not to be confused with the stages of pbc which are different, but anyway just clarifying that ,

Take care 🙂

gwillistexas
gwillistexas in reply to Kate50

mops67...the PBC booklet my dr gave me States this, which I believe is in line with your post:

PBC STAGE/PHASE

Stage 1/Preclinical

Stage2/Asymptomatic

Stage 3/Sympyomatic

Stage 3/Advanced

I agree👍

Thanks

labootz16
labootz16 in reply to Kate50

So with the first phase, would you consider urso treatment?

labootz16
labootz16 in reply to Kate50

So with the first phase, would you consider taking ursodiol if my gastroenterologist suggests it?

labootz16...I probably would go with his suggestion on that. I’m in 2nd stage so I really couldn’t say. He may want you to , so hopefully can get a grip on it now. ❤️

Thanks. Do you take urso? Any problems with it?

I took it for 8 days. Itched after couple days then whelps 7th day. No, I can’t take it.

The booklet says, for Stage 1...inflammation of bile ducts. May test positive for AMA’s, normal liver function tests. No symptoms.

Thank you, good to know. Do you take anything else?

Yes, I am on Ocalvia.

Thanks

Kate50
Kate50 in reply to labootz16

Hello again, I would definitely take it if it was advised by your doctor because the evidence is there that it slows down the progression of pbc, try not to worry I know it’s scary when you are told you may have pbc, I have been in your position so I totally understand, just be kind to yourself, take care 🌸

labootz16
labootz16 in reply to Kate50

Thank you so much! It is scary and I really dislike taking meds so it's good to hear other ideas on the subject.

Kate50
Kate50 in reply to labootz16

Totally understand I’m the same hate taking pills but I took urso for 14 years before I had my transplant and I never had any side effects, I was definitely better on it 🌼

labootz16
labootz16 in reply to Kate50

Thanks

Hidden
Hidden in reply to labootz16

I would take it. But if you have doubts, go get a 2nd opinion.

labootz16
labootz16 in reply to Hidden

Thanks, opinions help!

Hidden
Hidden in reply to labootz16

To clarify, I mean to say a 2nd opinion from another doctor.

Hidden
Hidden in reply to labootz16

Do any of your doctors know any specialist at the U of M or Mayo? Ask them & have them make a phone call on your behalf to get you in. Sometimes that works. At one point, I wasn't sure who to see & one of my doctors mentioned a leading specialist, but he was not taking on new patients. My orthopedist at that time was the Director of Sports Medicine & Rehab at the same teaching hospital. I asked him, if I needed a favor...can he get me an appointment with the specialist & he told me he can do that for me if I wanted him to. But my GI suggested someone else at his teaching hospital & it was fairly easy to get an appointment. If it wasn't, I probably would have asked my GI to intervene on my behalf since they both teach at the same medical facility.

labootz16
labootz16 in reply to Hidden

Been referred and put on a waiting list for both places. I'll keep trying. Thanks.

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