"PBC in remission" - any other experiences please?

[channelview]

Helllo all

Would be very grateful to hear of others experiences. Can PBC be "in remission"?

I've always understood that it was a one-way process in which progressive damage took place to the bile ducts and there ain't no way of stopping it, and the jury is still out on whether urso slows it down.

But I've had a consultant write in response to recent blood tests, which show my biliruibin back to the level it was in 1998, that my PBC may be "in remission".

Now, as I understand it, for the disease to be "in remission", that would have to mean that your bile ducts are regenerating themselves? And that is not supposed to happen?

I have always been told that PBC is a one way disease, gradual and progressive destruction of the bile ducts.

Test-wise, I have had a high (1:160 upwards) AMA M2 antibody since 1998 but otherwise normal LFTs. The bilirubin has always been within normal range but always very slowly rising, from 9 in 1998 to 16 in 2013 (on a scale of 1 to 20). (I am sceptical about the meaning of LFTs by the way, having seen a relative with normal LFTs then be shown to have a totally destroyed liver).

Recent blood test showed bilirubin at 10 (ie back pretty much to 1998 levels).

Would be very grateful to hear if anyone else has had similar experiences and whether their consultant believes that PBC can be "in remission". Thanks

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Here is a quote from a Pbcers.org 'Question and Answers' page regarding 'remission' of PBC.

"David Bernstein, M.D.

Chief, Division of Gastroenterology

North Shore University Hospital

Manhasset, NY

7/14/2002

Question

Is it possible for PBC to go into remission with or without medications? If the symptoms decrease after taking actigall/urso, could this be due to the slowing of disease progression?

Answer

PBC is a progressive disease in almost all patients. However, PBC can progress at different rates in different people. Therefore, it is possible that the rate of progression may be extremely slow in some people who may be unaffected by the disease in the long term. Others may rapidly progress in a period of 3-5 years to advanced disease.

We do not fully understand the rate of progression. It appears reasonable that the disease may progress at some points and remain quite at other times. Unfortunately, no spontaneous remissions have been reported.

Certainly, therapy with ursodeoxycholic acid has been associated with slowing the progression of the disease in some people. These medications have been shown to lengthen the time until liver transplantation and to slow the development of fibrosis."

Cited at: pbcers.org/support/drpanel/...

[PBCRobert Partner]

Hi,

As Dianne's link alludes to... PBC is understood to be progressive, for all it can be so slow that almost no progress is detected in some people for many many years.

To have a complete picture, you need to know where your counts are and where they have been. You also need t know what's going on in your liver re any potential cell change. Most clinicians use fibroscan, ultrasound and/or MRI or MRE to scan the liver to see wher cell change is.

There are many reasons for abnormal liver counts, so clinicians will look for patterns over many years to determine what is happening.

In many cases, Urso leads to normalisation of liver biochemistry tests but this won't mean that PBC is I remission. Nor does it mean that you should stop taking urso.

[chynablue]

Hi channelview, I would have to say that "in remission" does not mean that bile ducts are regenerating. Once scar tissue forms, it does not heal away. However, the liver can continue to function at normal levels even when it has to work around scar tissue.

I would assume that your consultant meant that your PBC is not progressing right now?

LFTs can be in the normal range even if the liver has scar tissue because LFTs measure cellular damage, not the amount of scar tissue. Imaging, biopsy, and fibroscans measure scar tissue. That's why sometimes patients with cirrhosis have normal LFTs but a very damaged liver. Here's a link with more detailed information about LFTs: labtestsonline.org/understa...

[channelview]

Hi and thanks very much for all the responses.

That's a very clear explanation Chynablue. It seems to me therefore that PBC cannot be "in remission" and the consultant shouldn't have told me that it was. It might be progressing slowly, but that's not the same thing as "in remission" which means " a temporary diminution of disease or pain" .

I have never had a biopsy or scan, so I do not know how he can say that the disease is "in remission" as he has no idea at what stage it might be.

My GP always tells me that because the LFTs are normal, this means that my liver is perfectly healthy (which I know to be obviously nonsense since a close relative who had a blood test done a few months before their death, showing perfect LFTs, was found on autopsy to have a liver which was completely destroyed by sarcoidosis .

[chynablue in reply to channelview]

I agree, channelview. If it were me, I think I would request imaging to check the health of the liver and bile ducts. Blood tests are not thorough enough. Are you seeing a liver specialist? I don't think most GPs have enough training when it comes to PBC patients. The PBC foundation might be able to help you out if you run into any resistance when requesting a specialist or imaging. They have helped others on here before.

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Hello channelview.

My theory regarding PBC is that no it cannot go into remission but it can halt. I say halt due to the fact that whatever damage we have at this point might not be repairable depending on how the PBC has progressed. But I do believe PBC can come to a halt and may or may not start up again.

I also believe that if a cure is found in future it might stop the PBC progressing and but it won't in a lot of cases change any damage that might have been sustained with the PBC so we continue to live a compromised life. But for me if I could have something magical tomorrow that would just stop the PBC for the indefinite future I'd take that knowing that it shouldn't get any worse and live with the current sympton of itching that I have.