New to the group but not PBC.

[Chulachela]

Hi. I’m 57 and was diagnosed with elevated liver enzymes in 2013 while getting routine blood tests at a Planned Parenthood visit. My Dr did not know why. I was not drinking. He wanted to put me on Prednisone and I refused due to the side affects. I went another year trying various liver cleanse and diet but my itching became severe. I found a liver specialist who put me on 10 mg of Prednisone. I am now on Urso Azithaprine and Ocaliva and off the Prednisone. Doing well. Muscle pains and foggy moments but keeping positive. I enjoy reading these posts, they are very helpful!! Thanks!!

[butterflyEi]

Hi and welcome to the group. Seasons greetings.

[monamayy]

I'm new to this group as well, and so thankful to have found you all. About two-and-a-half months ago I was diagnosed with PBC. Doctor put me on urso. I seem to be doing okay on it. Symptoms are not too bad. At the beginning I had quite a bit of hair loss but that stopped and then started with the lower back pain, that too passed. I do get nausea off and on but not very often. My doctor will test me in one month to see if the Urso is working. I have learned so much from reading all your posts. I've been reading as much as I can about this condition.

[genj65]

Glad you refused the prednisone I started off on it 2015 to 2017 it changed my life for the worse! I gained over 50 pounds, became diabetic stage 2, couldn't walk without walker due to severe foot swelling and lower back pain. My vision became bad due to the severe swelling in ny face that they referred to as moon face. I finally was referred to hematologists this year from University of Michigan and she got me on track and put me on Urso although I had to go through a second liver biopsy because my first one didn't clegive clear diagnosis. It said I had either auto immune disease or PBC . I swore I'd never do another biopsy again because I had one in 2016 and It scared me because my first one landed me in the hospital for 7 days due to rare internal bleeding. Thank God the second one didn't and they confirmed it was PBC and stopped guessing and playing with different drugs! My liver counts are lower and hopefully headed in the right direction. Glad you are doing well. May everyone on this blog be blessed and healed in the coming year 2019!!

[GrittyReads]

What do they think you have, if it's not PBC? It is quite unusual for anyone to be taking your medication and not have PBC.

Did they test for AMAs? (antimitochondrial antibodies). The presence of AMAs, plus abnormal liver function tests (lfts) (that are abnormal in manner typical for PBC) is enough for a diagnosis of PBC. Also, it is possible to have PBC with just elevated lfts, but no AMAs …. although a liver biopsy would usually then be done, to confirm if PBC was present in the liver.

I would ask to be seen by a PBC Specialist, and have both your tests and your medication checked. It is still common for many Medics to not know the new, official guidelines for the diagnosis and treatment of PBC. Do check out the 'PBC Foundation' website - link above. They host this site on 'Health Unlocked' and are one of the leading advisory groups/charities on PBC.

Hope this helps, take care.

[Chulachela in reply to GrittyReads]

The title says, New to the group, but not PBC. I was diagnosed with PBC. I meant, I am not new to PBC. lol. Sorry for the confusion.

[GrittyReads in reply to Chulachela]

Oh, now I see … sorry! It was a very hurried reading on my part, plus the urge to warn you.

Take care,

Gritty.

[VeeWat in reply to GrittyReads]

Can they see PBC on a liver biopsy?

[GrittyReads in reply to VeeWat]

Yes, a sample of the liver, taken by a biopsy can be looked at under an electron microscope, and medics can see the damaged and destroyed biliary tubules. These are minute and are found all over the liver, at a super microscopic level. The walls of the tubules are maybe just one cell thick, but they are the parts of the liver that are destroyed by PBC. As the cells that make up the tubules are destroyed, then - over a long time, as the biliary tubules are so tiny - the biliary tubules themselves cannot function and are destroyed. As more are damaged, the liver finds it harder to get rid of waste products and regulate itself.

As the tubules are so small, it can take a long time for this to have an effect, but the warning chemicals that are tested for - when they test for PBC = the liver function tests (lfts) - can be noticed earlier, which is why any odd readings in the lfts should always be treated seriously by medics, and other tests done, then eg: check for AMAs, and maybe do a liver biopsy, or a fibroscan.

Hope this helps,

Gritty

[VeeWat in reply to GrittyReads]

Do they have to be looking specifically for PBC in a tissue sample to see it or is it very obvious?

Does the doctor tell pathologist it is suspected and then they go searching for it?

Thank you

[GrittyReads in reply to VeeWat]

Sorry, I just sent a reply, but it may have gone to Culachela, the main poster (above) not to you VeeWat, but you should find it.

[ninjagirlwebb in reply to VeeWat]

I don’t believe the doctor would ask the pathologist to look for something so specific because you really want an unbiased comprehensive biopsy so that anything amiss is noted in the biopsy report. Normally, doctor would give a history of the elevated LFT results & the bloodwork that triggers the need for the biopsy to that medical team.

Often depending on the pathologist’s experience, the issues on hand may not be obvious & the biopsy comes back inconclusive.

That was what happened to me when I did my biopsy. My hepatologist then had the slides sent out to a world renown liver pathologist to get a 2nd opinion & he diagnosed the pbc.

Hope this helps.

[GrittyReads]

I'm not an expert, so it might be better to ask the 'PBC Foundation' (they host this site on 'Health Unlocked' : see the link at top/side to their website).

My understanding is that … if/when PBC is strongly suspected - eg from blood tests and symptoms - but the Medics feel that the tests alone are not conclusive to support a diagnosis of PBC. For example: some people can have PBC, but don't have AMAs, yet they may have raised LFTs that are typical of PBC. So while the Medics would also be careful to do other tests, to rule out other liver conditions ... because of the worrying liver function tests, they would probably do a liver biopsy to check for PBC damage in the liver.

So, my assumption is that they would be looking for the microscopic damage typical of PBC, but I'm sure they would also be on a general lookout for other issues as well. So I

suggest you talk to the people at the 'PBC Foundation', if you have any worries related to a liver biopsy, other tests or your diagnosis.

I only know what I know from talking to my PBC specialist, from reading all the posts and info and publications of the 'PBC Foundation' ... and then also from reading some 'research papers' on PBC, once I felt I understood the basics. Sadly, PBC can sometimes be one of those conditions where we have to become out own best experts.