Just diagnosed (caught literally RIGHT when disease started)/ possibly linked to acetaminophen?

Hi everyone! My name is Andrea and I am 33 yrs old, living in California. I was just diagnosed yesterday but I would like to share my story and gain some insight.

I gave birth at the end of last Sept. and my labs were all normal then, including liver enzymes. They were normal throughout my whole pregnancy. Even normal back in 2015 when I had routine bloodwork done for a health program I was going into. But just a little over two months after giving birth, (beginning of Dec), I had routine labs done to check my thyroid levels. This was when it was discovered that I had the elevated liver enzymes. The next day I went in for more blood tests and got the call a few days later diagnosing me with the PBC based on the AMA test (I dont know the exact number, but it was pretty high). I was referred to the g.i. doc who sent me to get the biopsy. I had the biopsy done a few weeks ago but the inflammation is so little they couldn't confirm the diagnoses. They are sending the sample to the university hospital to get a second opinion. My g.i. doc believes its because the disease literally JUST began.

After being diagnosed, I've been doing a lot of thinking about everything that could have caused this to happen within the 2 month period and I'm wondering if it could be tied to acetaminophen. Just 9 days before my first routine blood draw that detected the elevation, I had taken 2 extra strength tylenols. I state this because I read an article where researchers out of China were linking PBC to acetaminophen and considering I know within a two month period when this disease began, I feel like this information could be of some importance. Especially since this happens to both men and women.

I thought I would share this with y'all and I was also hoping to get some questions answered.

What are all the medications out there to treat this? I know of Urso but I'm also under the impression it doesn't work for everyone.

What are considered "decent" levels to be at for the lft?

Will I know at my 3 month checkup whether I'll respond to urso or could it take additional time to respond?

19 Replies

oldestnewest
  • I actually believe it is pregnancy that triggers it, it was for me. I had a baby in 2012 and then nursed him until 2014. I had normal LFTs for the entire time. I then weaned him at 25 months, and within a week, I woke up one morning, could not move due to crushing joint pain and fatigue and felt like I got hit by a truck. I quickly went to my PCP who checked my LFTs and the ALT and AST were elevated slightly above the upper limit.

    I then was sent to the Rhumatologist who tested me for RA, which was mildly positive, but so was my Alk Phos which started to creep up. I then went for two years with all LFTs going up, but not alarmingly. I then got sent to a GI doc, he put me on a very strict diet of no sugar, fruits, etc. He said that the LFTs would come down if it was a fatty liver disease causing the increases and if it did not work, it would be some other liver diseases that would require biopsy to diagnose. I followed the diet, and lost weight, and still no budging of my LFTs.

    Then my PCP tested my AMA again (first in March 2016-negative), and this time they were positive with a low titer of 1:40. I then was referred for a biopsy which I did not want to do. I had read that having positive AMA and elevated LFTs was a enough to diagnose so I demanded to be sent to a hepatologist and went to UCLA about a month ago. I had more blood tests including another AMA titer which came back very positive at 1:1,280 and Alk Phos at 128 with ALT and AST doubled the upper limit of normal. They diagnosed me and I am now on 900mg of ursodiol a day. During my visit with UCLA hepatology, I saw two doctors, a fellow and the Chief of the department. They both stated that PBC can be triggered by pregnancy, but goes un-diagnosed due to the body's own immune system being suppressed during pregnancy (and during lactation) as a way to safeguard the fetus in being exposed to the antibodies and disease. They said, they have seen multiple cases in which PBC comes out post-pregnancy.

    Lastly, my liver docs say they want to see me in 6 months to check for response to URSO. However, my own PCP (who is very knowledgeable about PBC) is going to check my LFTs after 6 weeks to check for possible elevations that could arise due to being on Lipitor, as I have high cholesterol too.

  • Thank you so much for your reply and for sharing your story. It's comforting knowing that there's someone else around my age and here in California as well. And I'm sure there are probably a million factors as to how this disease starts. I figured that since it also happens to men and women post menopause, that the acetaminophen claim made some sense.

    How did you like your visit to UCLA? When I was first diagnosed in Dec, I thought about seeking care there...but its a 2.5 hour drive so I settled with the local docs here. They have me on 1000 mg Urso which I just started today. I go back in 3 months to see if I respond. When did you start taking it?

  • I started taking it about two weeeks ago, it seems to agree with me other than creating some constipation which is not too severe. I'm on the generic Ursodiol 300mg capsules.

    I like UCLA, after getting the referral, I got an appointment less than three weeeks later. When I arrived, they saw me very quickly, within five minutes. I was assigned two doctors as well. Being a fellowship program, I saw the fellow first who spent over 30 minutes with me, went through an extensive history, symptoms, and gave me a physical exam. Then he consulted out of the room with the chief of the department for ten minutes, they returned together. I then went through a similar round of questioning with the both doctors present. They answered all my 15 questions I had written out, spent about another 15 minutes doing so and then sent me to the lab for blood work.

    I signed up for mychart and then got results and a diagnosis via email from the chief on mychart. I write to him via this system quite a bit and he always answers the same day. He's very on the ball and seems to like electronic communication. I would say, I give UCLA an A+.

    Let me know if you have other questions and you're right, there certainly are other suspected triggers for this disease mostly things like viral/parasitic infections, exposure to toxic waste/chemicals, and even stress. I'm sure you know this, but woman outnumber men 9:1 for incidence. So, obviously there is something genetic or hormonal that predisposes. Most sufferers have other autoimmune diseases as well. I certainly do.

  • Thanks for the info. Please keep me posted. I'd like to stay in contact with you considering we were both diagnosed at the same time and have so many other common factors between us.

  • Let's stay in contact for sure. I'm here if you need to compare info or talk.

  • Sounds good!

  • I do believe alot of stress and using tylenol as well for me at the time is a good indicator. I did feel that tylenol was my choice for headache remedy etc. Very interesting.

  • Hi andrea83

    From a UK member - hello and welcome to the forum.

    Congratulations on your new arrival I hope your baby will bring you much joy.

    Also good news to be diagnosed so soon, it does seem to give us a much better outcome.

    I was diagnosed 2006 in my mid fifties. I have also read that Tylenol or paracetamol (acetaminophen) is a contributor to the possibility of PBC. I was lucky in my life not to suffer period pain or headaches so never found the need for tablets however in 2004 I had a hysterectomy and used pain killers prescribed which probably had some concoction with acetaminophen in it. However I had presented to my GP with itching and tiredness as early as 1995. As I worked in a medically aligned profession I had been given the HepC inoculation and there was one other incidence when I was using an oven cleaning product that caused me a problem - it is to one of these two events that I attribute my trigger for PBC. Never having been blessed with children for me this trigger does not apply.

    best wishes

  • Thank you for your reply and for sharing your story as well. There is so much comfort knowing I'm not in this alone and I am so happy I found this forum as well. I hope to gain as much insight and info as possible from all you veteran PBCers :)

  • I was diagnosed shortly after having my baby boy in 20023. I believe its not pregnancy that brings it on but the very fact that you are more likely to have tests etc., mine was picked up because I had blood tests for something else entirely and the LFT was ticked on the off chance. Also, apparently the raised enzymes that show in the tests for PBC are also shown to be raised during pregnancy - but this is hormonal and nothing to do with PBC.

  • How has your journey with PBC been so far if you dont mind me asking?

  • Its been quite dull and uneventful actually!!!! I started taking URSO a year or so ago, but I hadn't been taking it every single day (naughty - but quite in denial that I would have to take medication for the rest of my life!!) anyway, at my check up 6 months ago my blood results hadn't responded at all, and they think it may be that the URSO isn't working but because I hadn't been taking them all the time that could be the reason. I have to go back at the end of April, so we'll see if Its made a difference this time (I've been very good and taken them every day!) Apart from that, and not being able to get life insurance when we moved house - quite uneventful!!

  • Do they know if its progressed at all since you weren't responding to the meds?

  • I don't know, he just said it hadn't responded and that he didn't know if that was because of me not taking meds properly or because the urso didn't work.

  • Hi,

    I believe for some women it's the pregnancy that triggers something. My wife too after giving birth to our daughter developed PBC. I think it took 1 or 2 months for her to start complaining about the pain at the right side of abdomen. We have her recent blood tests during or before the pregnancy and all liver related parameters was in the normal levels. Of course we don't know of AMA.

    I don't think it has anything to do with painkillers. I think between 3-6 months it should be clear if you respond well to Urso or not.

    There is no one general formula for the cause of PBC but it's interesting to see many women develop it after the Pregnancy. This is certainly something for the Research community.

    This cannot be just a coincidence that many women develop PBC after Pregnancy. Also I believe that there is also a link with Vitamin D deficiency...PBC is more common in the countries with less sunshine...I also believe we need some more dirt around....in a hygiene environment immune system gets crazy some how. I think it needs something to be busy of....I believe PBC is not so common in Africa :)

  • Hello andrea83.

    Had to look up this acetaminophen and discovered in the UK where I am it is paracetamol. My views are I am not convinced that this is a trigger for PBC. I did find an article online from several years ago (posted link below) and it doesn't mention from the article I have read regarding something in the way of liver-related disorders (unless of course someone overdosed and damaged their liver).

    Yes I think it is fair to say that more than likely all of us have taken paracetamol (or the equivalent of what it is known outside the UK) at some point. I was raised (born 1964) on aspirin as that was the norm back then. I still used to buy aspirin for the rare occasion I used a painkiller in my adult life. I have never been one for taking painkillers (I refused all when I was giving birth to my 2 children). Paracetamol for me has been a bit of a rarity but at the same time aspirin hasn't been much of a feature either. I think the only time I might have used a painkiller in the past was for toothache prior to getting a dentist appointment.

    Over the past 6 years since diagnosis for me I've thought of how PBC came about in my case and have even in the past posted on here asking everyone if they've taken this or had this (vaccinations) but there's been no link as I think it would be something everyone had to have done and I think in the case of paracetamol, yes we probably all have but I don't think this is what was a trigger somehow.

    I never had any problems in either of my pregnancies back in the latter part of the 1980s, PBC for me surfaced by me itching over 20yrs later.

    The only other thing I have thought of that it is something that we might all have is dental fillings.

    dailymail.co.uk/news/articl...

  • Thank you for your reply and for sharing some insight. So, you believe that youve had PBC for over 20 years?

  • No andrea83, sorry if I wrote and ws misunderstood. What I was saying is that I had no experience of any form of itching in pregnancy. My 2 children will be 31 and 29 this year. I only started itching early 2010 so almost 7yrs ago.

    The consultant did state he reckoned I'd had PBC 'a few years' when he diagnosed me December 2010. In 2010 I had a normal looking scan and was informed at my first consultation that my bile ducts were 'clear'. Though my bloods were above normal range (a couple were double above normal) all I had at the time was the itching and fatigue (though I never really thought about the latter. Fatigue seemed to vanish sometime in 2011, I just get tired some days due to broken sleep at night due to itching).

    I originally thought when I was diagnosed that having hepatitis vaccinations for working in a medical environment might have been the trigger as I had those a few years prior to starting to itch. But I don't know. All I can say is the consultant stated he did not know how we acquire PBC.

  • I found out about my PBC about a year after giving birth. Some say it's linked to that...

You may also like...