PBC likely?

[Aussie05]

Hi! I'm a 37 year old male. Recently went to the doctor about long term back pain that had changed from feeling like an injury (which I'm sure it started out as) to constant muscle ache (kind of hard to explain!). I had researched it and suspected I had an inflammatory condition. When I told my doctor this he looked at my notes and said 'oh you are positive for mitochondrial antibody'.

Well that blood test was taken over two years ago and he'd only just spotted it! The test was taken as I had then developed vitiligo. I know that autoimmune diseases tend to come together so it's not a surprise although I had hoped it would stop with my back, but from the blood results does PBC seems likely as well? I've also realised that a small itchy patch on the outside of the sole of my foot could be a symptom.

I'm very concerned for my future at the moment, I live far from my family and therefore from help if things go rapidly downhill. I know that this can take a long time to develop if at all, but is it possible to continue with a normal life and importantly for me to work and have a career?

[Hidden]

Hello Aussie05.

Have you been having your liver function tests (LFTs) checked at all since you mentioned that your doctor has said you have anti-mitochondria antibodies (AMAs).

Not sure if you do live in Australia as I seem to suspect but I'm in England and back in 2010 I went to my doctor feeling very fatigued and itching. The fatigue wasn't my concern, it was itching. I had blood test after blood test during that year, a scan (showed pretty normal liver and other organs) and then I was referred to the local hospital Hepatology Dept where I was given the AMA (and ANA) blood test which diagnosed me with PBC Dec 2010.

I'm now 49 but the only sympton of PBC for me seems to be the abnormal bloods (that are much much better since Dec 2010 due to taking urso now) and itching (night time). I haven't suffered fatigue in a long time but tiredness I do if not slept well the previous night.

It can be difficult from the symptons you mention as to whether they are PBC related as I'm no doctor of course. Not sure if the liver function test could be related to vitiligo as certain other conditions can give abnormal LFTs (bone conditions can).

I think you need to ask your doctor to perhaps refer you to a consultant for a definite diagnose. Maybe that you have your AMAs rechecked and LFTs at intervals.

The usual case if one has PBC is to start on ursodeoxycholic acid (urso for short or UDCA as it is also known) and then have the LFTs as well as GGT (this gives a reading for what possible liver inflammation there is) and full blood count (FBC) that seem standard in PBC. (There are of course other blood tests that can be performed at intervals but they are the usual.)

For now though I'd concentrate on living your life, I do. I cannot see myself worrying about PBC all the time though it is annoying of an evening when I start itching. Each time I grab the pill packet/bottle I am reminded but I try not take too much notice these days being 3yrs diagnosed. I think it is far better dealing with things as they come along and not before they ever do as they never may come along and to me it would be needless worrying about nothing.

Hope you find out but if you do have PBC lease understand that it's not something that will happen very fast in the early stages and even at the final one that can go on for years. It is said that with PBC a person tends to die with it but not from it. With the LFTs too I'm certain that we have the heads up as to how we are doing so we are slightly ahead of 'the game' there.

[Aussie05]

Peridot thanks for your reply. I forgot to mention that my blood's being tested again in a couple of weeks. The doctor seemed concerned about my liver so I would imagine he's doing the appropriate tests (I, of course, had never heard of PBC let alone have any liver worries at the time so didn't think to look at what they were going to check for), I do know he wanted to look at my cholesterol as a marker of liver function. I will certainly be insisting on seeing a consultant if everything is confirmed.

I guess I do need to just get on with things, it's just that the first thing I found on googling PBC were life expectencies of 2 - 4 years following diagnosis! A bit of a shock to say the least (all I had on Monday morning was a bad back!!). I think I'm now right in understanding that this was probably based on a time when Urso wasn't used and maybe people are now being picked up much earlier due to more testing?

[Hidden]

Hello again Aussie05.

It is a fact that patients with PBC (not sure about other liver conditions) can have higher cholesterol levels but I've also read that it can often be the good cholesterol. There is cholesterol known as HDL and LDL. Like people without a liver condition high cholesterol can occur in those too. With PBC due to inadequate bile flow due to bile ducts under attack within the liver, I think we then have a slight problem with digesting fats, this is where the addition of urso comes in.

I do not take any notice of some of the things I have read about PBC online. I resolved a long time ago (PBC diagnosed Dec 2010) that I'd deal with anything there and then as opposed to wondering how it would go over time. I don't think that thinking far ahead is worth thinking about, the here and now are far more important. After all, in my mind, why think about that when you can do so much with your life now. What you could waste now you can never get back if it does all eventually go pear-shaped.

I wasn't picked up with PBC until I had the sympton of itching as that is when I went to see a doctor. I hadn't really had any aches or pains prior nor anything to bother about really. I was fatigued at the time but thought due to working overly-long hours and at the same time struggling to get by supporting myself financially. I'd never been one for visiting the doctor, always tried to keep myself remaining healthy.

Some patients with PBC it is picked up as a routine blood check After all the full blood count (FBC) and liver function test (LFT) are some of the most commonest blood checks. Apparently if you are a regular alcohol consumer (I never was) you can have an abnormal reading on the LFT. My GP rechecked my LFT a fortnight after I had the first abnormal one after asking if I drank alcohol (to which I said only of special occasions but not regularly). For someone with no liver problem abstinence for a short period of time can cause an abnormal LFT (expect if not a sky high abnormal one) to come back down to normal and a doctor would know the cause. Mine just kept on climbing higher and higher in the 8 months prior to diagnose.

I think the grey area with PBC is that it's not known exactly how urso works and also it's not a cure. It is thought to slow down the progression of it by introducing a useful component of bile to our system to aid what was a compromised digestive system due to PBC.

Apparently some PBC patients on urso find their LFTs come down to a more normal level and for some it remains at a good stable level that is still abnormal but an acceptable abnormal (like mine is said to be currently). PBC can actually halt for awhile or even never progress in a minor few and it adds up that if someone with PBC has returned to normal LFTs over a period of time then I suppose that could be considered even though they still have PBC and always will, it has come to a standstill whether it be temporary or possibly permanent. I think this can be something to think about with PBC that is good.

If you were to have PBC then I'd take time to digest it but then like me switch off and get on with life, just deal with what you have at the time.

[Aussie05 in reply to Hidden]

Hi Peridot, I've only just been to get my blood retested and will find out my results soon.

I did have a chance to have a look at my previous results and everything on there is completely normal (including LFT, no cholesterol taken as it was not a fasting test). The only odd thing was a 'borderline positive' for AMA IgG, but negative for IgM.

I believe the IgG is the form associated with PBC, but from having a quick look on t'internet it seems lower levels can be associated with 'other' autoimmune diseases - I certainly have vitiligo (possibly some form of arthritis starting as well, not sure about that tho). Do you or anyone else know anything about borderline levels of the mitochondrial antibody?

Edit to add - just realised that there were two results for the IgG, borderline and 320. I think the 320 means a very high AMA reading doesn't it? Gah I wish my doctor would have explained some of this to me.

[Hidden in reply to Aussie05]

Hello Aussie05.

I'm not fully understanding of your reference to AMA IgG or IgM as I've not got a lab printout of my AMA (and ANA) blood test later 2010. I got informed via letter from the consultant that I was testing positive for AMA at 'a high titre'. Worked out the titre is measurement but haveno figure to go off or to see what the full terminology for AMA stands for.

I have looked it up on the net but only found it referred to as AMA-M2. I did find this on medicinenet.com (a Boots website I believe) tho' and quote: 'The PDC-E2 antigen is also referred to as M2, a term introduced to designate it as the second mitochondrial antigen discovered by researchers interested in PBC.'

Also it ended with:-'The antigen recognized by AMA in patients with PBC is now known to be PDC-E2 and is also often referred to as the M2 antigen. So, newly developed tests for antibodies that bind to PDC-E2 are more specific and are now available to confirm the diagnosis of PBC.'

The blood test is mentioned which went on to state: 'AMA are detectable in the serum in 95 to 98% of patients with PBC. So, AMA are tremendously important as a diagnostic marker in patients with PBC. The AMA titers in PBC are almost universally greater than or equal to 1 to 40. This means that a serum sample diluted with 40 times its original volume still contains enough antimitochondrial antibodies to be detected in the binding reaction. A positive AMA with a titer of at least 1:40 in an adult with an elevated alkaline phosphatase in the blood is highly specific for a diagnosis of PBC.'

Now the other antibody that I had same time as AMA was the ANA and I found what that stands for on wikipedia, I quote: 'ANAs, also known as antinuclear factor or ANF'. Apparently ANAs attack tissues and can be an indicator of lupus, arthritis and sclerdermo for eg, I found that AMA attacks epitheleal cells within bile ducts.

I seem to think that the ones you are mentioning are a type of protein in the body. I looked back on my results and found 2 that I'd not taken notice of before myself and looked those up. I did have one to check for copper (ie Wilsons Disease) back in 2010 and now know it was known as the ceuroplasmin blood check and another which goes by Alpha something (abbreviated A1A), both of which were normal. (The A1A can be positive in liver and also lung disease.)

I did have one called that GGT that I have each time as that tends to be an indicator of liver damage.

If I am right in thinking the one you did mention by IgG I think that might be the globulin one and if so I have that each time I have repeats and mine is slightly abnormal, always has been since 2010. Apparently that can be like this with PBC.

From what I have just read patients with PBC tend to test positive for the AMAs in around 95% to 98%, there are some who do test normal and normally if PBC suspected (or other liver conditions) then a biopsy tends to be the norm then.

Your doctor may have been checking your blood for other conditions or health problems. I might have had the bloods you mentioned but as far as I can see looking at mine, I cannot see anything on mine that seems to match up with the terminology you have used there.

Next time you speak to your doctor it might be a wise thing to write down the bloods you have mentioned and then ask them to be explained in simple terms as for one, what they were taken for and then ask what the results means.

Good Luck. Be interesting now at some point for you to follow up on here and fill me in.

[Aussie05]

Hi Peridot

IgG and IgM are different forms of antibodies (IgG is Y shaped, IgM is made of 5 Y shaped molecules in a ring with the top part of the Y sticking out). In a NORMAL immune response you would make lots of IgM against an invader (eg virus) and only a little IgG, then the next time you are infected with the same virus you would produce IgG. Both types will be able to stick to the same site on the virus. I don't know how this would apply to an autoimmune disease like PBC though because presumably the immune system is under constant stimulation by the presence, in our case, of mitochondria. I have read that having only one type of antibody related to an autoimmune disease means you are less likely to develop the disease, but that relies on having a low antibody titer.

Anyhow, I've just got my LFT results and they are 'normal'. Had to phone in to get them and will be getting a printout later in the week so if there's anything interesting on there re antibody tests, I'll post on here. While it's a big relief, I realise that I still need to keep an eye on how things develop. I guess I'm lucky in that if there is anything it's very early.

I don't know if you saw a post I wrote on another thread about the prevalence of AMA in the healthy population. While 95% of PBC sufferers express AMA, the antibody prevalence in the general population is just under 1%. This means that only around 3% of those with the antibody have clinical PBC. In my opinion it's important that this distinction between AMA and PBC is made.

Have you read much about the evidence that PBC is caused by a viral infection (virus like particles have been detected in the liver of PBC patients and not in controls, among other evidence)? There are trials underway at the moment looking at the use of anti virals in slowing / reversing the progress of PBC. There have been trials in the past that showed limited success. If I were to develop full PBC at a later date I would certainly be looking at trying to get myself enrolled on a trial (the drugs they are using are already licensed in other diseases so any risks or side effects are well known).

Thanks for reading Peridot! I hope everything is well with you!

Aussie