Symptoms are back with a vengeance!

[JessiG19]

I’ve been months without any symptoms of PBC. No fatigue or joint pain. No brain fog at all! Back to normal before this ever came up.

Then this past week after my son had the stomach flu and I had several sleepless nights and BAM!!My symptoms are back.

I haven’t been diagnosed Bc I declined the liver biopsy. But had the positive AnA 1:1280 with nuclear dot pattern and AMA of 74 but had normal lft. So I didn’t qualify.

I think I’ve been in denial about this awful disease but I’m pretty sure I have it.

I paid a lab to do my own LFT just to see how everything was. It’s all normal. Which is a good thing, but kinda leaves me in a limbo position.

A lady on the pBC FB told me not to do the biopsy that I don’t have PBC. But I think you can have it be doormat and it will Eventually start to show up in LFT.

Advice is welcomed.

Sorry for the long post.

[Ktltel]

Hello JessiG19,

Stress is a killer. Sounds like you awakened the beast. But life is stressful....what can you do? I hope your son is feeling better and you can get some good rest. As for PBC, ...I believe 2 criteria are needed for possible PBC diagnosis. (1) A positive AMA-M2 blood test and (2) An elavated Alkaline Phosphatase. I've had PBC for 5 years. I was diagnosed with those 2 criteria, positive AMA-M2, and an elavated Alk-phos. I did end up having a biopsy soon there after which "DID NOT" show PBC at all. Only showed I had mild fatty liver. I was told that I was in the very early stages of PBC. That is the BEST time to get started on the medication for PBC. Did you have an elavated Alkaline Phosphatase? I believe you said everything else was in normal range. So, I'd keep a very close eye on that Alkaline Phosphatase number. In the mean time, baby your liver. Find ways to deal with stress and try to get good sleep. Some stay on the edge of getting PBC for a long time until it eventually manifests itself, meaning their Alk-phos finally goes up ..or it's been up and they finally test positive for AMA-M2. Usually BOTH those criteria are needed. But,....not always in those early, early stages.

Stella❤

[JessiG19 in reply to Ktltel]

Thank you so much for replying.

I don’t have high enzymes or bilirubin or fatty liver. I did have some small Lesions they said were common like a cluster of vessels I think it’s how they described it.

I do have a positive Ama m2 of 74 and Ana 1:1280 with the nuclear dot pattern and the classic symptoms of PBC. I’m thinking I’m and stage zero or one. The doctor did give me Urso. But didn’t want me to start taking it until after I had a liver biopsy. After reading how invasive that test is and sometimes can be inconclusive, I’ve decided not to do that. So the doctor said I could redo my labs at the beginning of the year, which is this year.

I think I’ll go to my GP and have them re-run my ANA and AMA and my liver panel to see where I’m at.

I think it was dumb luck that I caught it that’s early which I am glad for! All I can say is be your own advocate. It could save your life. Because I knew something was off, and kept making my doctor run test

[Ktltel in reply to JessiG19]

You are spot on!! They found mine by dumb luck as well and YES! Amen that this was found early.....seemingly, waaay early. About liver biopsies.....It's a huge (the biggest inside) organ, and a biopsy takes several micro-samples from "one side of the liver." So, what if what they're looking for happens to be elsewhere on your liver? Like, the opposite side, or the middle. You get what I'm saying? My doctors thought I was in super early stages in 2016. They still wanted the biopsy, which I did, and like I said, only saw mild fatty liver.

Down the road a couple years....a Fibroscan or a MRE (Magnetic Resonance Elastography) will show any liver stiffness (fibrosis) caused by PBC....(and fatty liver too, if you have it, you mentioned you don't, ...good.) Anyway, it's by these tests, along with your labs ( specifically Alk-phos, bilirubin. and albumin) which gives a really spectacular analysis of how your liver is doing. Urso med slows down progression of PBC. I started taking it in 2016. No biopsy confirmation of having PBC, but...I did have those 2 criteria. Positive AMA-M2 and a raised (but under 200) Alk-phos.

Just FYI. It's been a roller-coaster ride for me. My fatty liver skewed what I thought was PBC progression. BUT, ...when I fixed the fatty liver through diet,..some exercise, (still working on this,) anyway, my PBC was found to still be in early stages after 5 years!! I attribute this to me starting Urso immediately. Something to think about. 🤔

Stella❤

[JessiG19 in reply to Ktltel]

Do you think I should get a 2nd opinion to get a diagnosis through a scan and not a biopsy?

Like you said it’s better to start the meds now and not wait. Even my family Dr said you can have PBC and not elevated enzymes Bc we caught it so early. So why isn’t the GI Dr looking at it like that?

[Ktltel in reply to JessiG19]

Gosh, I don't know. It was my GI who referred me to the Hepatologist and HE, (Hepatologist) started me on Urso right away. A bona-fide Liver doctor might be the way to go. I still see my GI twice a year, and my hep once a year. My GI runs all the labs and faxes everything to my hep. It's a matter of miles. GI is 30min away and hep is an hour and 10min away.

Stella❤

[Lu11]

Hello JessiG19, I’m exactly in the same situation you are in. I’m AMA M2 positive but with LFT within normal limits. They did a sonogram and found a little bit of fatty liver, fibrosis 1. Like you, I took it upon myself to run blood tests and finally found answers. (Despite my Mom dying from PBC, my Dr. never tested ANA/AMA. ) I also saw a rheumatologist who found Seronegative RA. I have chronic pain, but have not reacted well to meds, so I only use an over the counter pain reliever (Advil) as needed. For now, I’m eating well and exercising and will request a blood test in a few months. I don’t think they’ll prescribe Urso without ALP being elevated. Hope you feel better and what you’ve found out is good news really! Lowering inflammation and having healthy habits helps. Seeing a naturopathic Dr. in addition to the regular Dr. is what works for me.

[JessiG19 in reply to Lu11]

Sorry about your mom.

I've been tested for a lot of other AI disorders, like Lupus, RA, AIH and the only other one that popped up was drug-induced lupus. But the kicker is, I do not take any prescriptions that were listed on the "maybe" causes of it. I don't take anything actually. So I was dumb-founded by that.

My Dr gave me the Urso bc he was pretty sure that I have PBC, he wanted me to do a liver biopsy. After doing my own research, I declined it for now. GI and my family dr both said you don't always have the raised enzymes, in some causes the symptoms show up before the LFT reflect it. I think it was dumb luck that I caught it, thinking it was something like Lupus or MS.

[Lu11 in reply to JessiG19]

Because my LFT shows “normal” they don’t consider me to have it...but I do! I have a lot of symptoms that my Mama had! I think it was dormant and then it starts acting up! I will also get follow up blood tests in a few months to check again. I have to say that taking Plaquenil really reduced my joint pain, but I started getting acne 🤷🏻‍♀️ so I stopped. I might give it a try again as it’s the only thing that’s helped. This was prescribed for my RA.

You mentioned that your symptoms started again after your kid had the stomach flu. In my case I think menopause triggered my symptoms! I’m glad I pushed my drs to do more testing and will continue to stay on top of my LFT.

[Michi1]

Jessica, have you seen a hepatologist? It sounds from your post like you are being diagnosed/treated by your Wow! What a great picture!. The symptoms you describe could be related to any of a number of autoimmune diseases. Have you looked into changing your diet to address inflammatory foods? If you haven't read it, get a copy of "The Autoimmune Solution" by Dr. Amy Myers. I may be very helpful. If I were you, I would find a hematologist who treats a lot of PBC patients and get an appointment.

[JessiG19 in reply to Michi1]

I do plan on getting a 2nd opinion from a hepatologist. Im waiting to hear back. I want to push for a liver scan, since I've already had an ultrasound.

I've been tested for just about every other AI disease you can think of. The only thing that popped up was drug induced lupus. Which is odd bc I don't take anything. My vitamins I take are your basic C, D and b12. I doubt that would cause a false test.

I do plan on redoing my lab work next month. Just to see where everything is at.

[AllHis]

Jessi,I’ve been struggling with specialists for 5 years…

Plaquenil for RA has been wonderful. ( It takes 6 months or more to work.)

You could review your symptoms at Sjogren’s Advocate. (Sjogren’s and PBC tend to go together… I think my seronegative RA is Sjogren’s.)

My Fatty Liver is now NASH 4, maybe look at fatty liver foundation here on healthunlocked for diet suggestions.

Sadly, my liver has advanced quickly (I think because methotrexate used to treat RA.)

I, personally, joined a liver study recently FOR THE LIVER BIOPSY. Now that fibrosis showed up, I simply cannot wait on my bloodwork to get a diagnosis.

You could also try no red meat for a few days & see if your body responds…

[JBH2000]

Hi JessiG19, why would you not get a liver biopsy? I’m stage 1 - and the only real way they can diagnose PBC is through a biopsy.I’ve been on Urso for over a year - my levels returned to normal except for the alkaline phos. Unfortunately (but fortunately) they also found sarcoidosis in my liver. I have been to the top liver specialist at Mt Sinai in NYC - and I will eventually have to be on steroids for awhile to get rid of the sarcoidosis. That I’m not looking forward to, but they found something that I had no idea that I had. Of course this will not happen with you, but a biopsy is really important - and really very noninvasive. Hope that helps!

[JessiG19 in reply to JBH2000]

I guess mostly the reason I opted not to do the biopsy was my LFT. From talking to a lot of other pbc’ers in the UK, It seemed like in some cases in the US they over do it with requiring a biopsy for a diagnosis. It’s somewhat different over there.

I’ll keep getting my blood work to make sure I’m still in a normal range. I did have a positive ANA with nuclear dot and the AMA M2. Did your sister have her ANA checked? That’s what put them onto running the M2 test for me.

With where my LFT levels are, GI educated guess is, I’m at stage 0.

I’m not saying I’ll never do a biopsy. But for now I don’t feel the need for it. I do have a GI appointment and we’re going to run the blood work again to see where I’m at. I’m also waiting to get a 2nd opinion. Covid has everything backed up.

I’m staying on top of it with monitoring my blood work, keeping stress down and vitamins that benefit the liver.

[JBH2000 in reply to JessiG19]

I absolutely think you should do what you are comfortable with doing. The most important thing is to stay on top of it and keep continuing to monitor! And listen to your body. If you feel more fatigued, or other symptoms suddenly come up, let your doctors know. We’re all in this together!!They monitored me since 2012 until I was officially diagnosed in 2020. This is a good forum to feel like you’re not alone, but ultimately it is your decision and your doctor’s decision what is best for you.

Good luck - reach out anytime - I’m not a doctor, but I’m a really good listener!

[JBH2000]

Jess- one more thing. Being AMA positive means nothing. My sister is AMA positive, and she doesn’t have PBC. I also want to reiterate- they are not going to find all sorts of things in your liver with a biopsy, I shouldn’t have even brought that up - I’m really sorry!!!! But I will say again - the biopsy is a piece of cake. It is not invasive at all. I had one slight incision on my side, and they took about a dozen “clips” of my liver. I went home, was care with my small incision on my side for a few days, and that was it. I get bloodwork done every 3 months. I have a GI, rheumatologist and a pulmonologist. I’m in good hands. Good luck, and try not to stress.

[CCordier in reply to JBH2000]

I was diagnosed in 2019 by a Stanford University Medical School Hepatologist {one of the best Med schools in the USA}. She told me I probably had PBC for 10 years at that point even though I didnt have any symptoms until 2017-18.

I mention this for JBH 2000 because this doctor also told me that one of the most indicative blood tests for PBC is a positive AMA. So, if your sister has a positive AMA she most likely has very early PBC, even without elevated LFTs and no symptoms. PBC does have a genetic component so it can be found in multiple persons in a family. Taking a low dose of Urso now may be important for her to limit any damage that may happen over time.

On the subject of biopsies: The hepatologist told me that biopsies are actually the old standard because the Fibroscan can show how much fibrosis {damage} is in the liver just as well as a biopsy can. I had one and its very easy and quick (especially compared to an MRI!). And much cheaper than an MRI or CT scan.

As someone who worked in a research lab at a Harvard University Med school, and who has a long term AI illness and spent a great deal of time researching it and have seen many doctors {Myalgic Encephalomyelitis or Chronic Fatigue Syndrome - I've had it for 34 years!} I VERY strongly recommend that you see a Hepatologist at the nearest Medical School. Any doctor who teaches at a medical school is required to have top notch knowledge of their particular speciality. And, since PBC is a relatively rare disorder you need someone who knows their stuff. DONT RELY ON YOUR PRIMARY CARE DOCTOR! Most of them dont know squat about PBC. And most Gastroenterologists dont know enough about it, in my opinion.

Good luck to all.

[JBH2000 in reply to CCordier]

Hi Ccordier- thank you for all the info, but I think each case is very different. I had a positive AMA, and they watched my liver enzymes for 9 years until they felt that the steady increase needed attention. I did go to the top liver specialist at Mt Sinai in NYC, and she reiterated that it is not necessarily hereditary. There are many folks who have a positive AMA, but do not have PBC. I was thankful that I did get a biopsy, because in my case, they found that not only the PBC was confirmed, but I also had sarcoidosis in my liver. Since the biopsy, I’ve had chest X-rays, which indicated sarcoidosis in my lungs. My point is, everyone is different. This is a wonderful forum to share personal knowledge- but ultimately, each person is different and should get the best treatment possible.

[Lorelle09 in reply to JBH2000]

Hi JBH2000 I have positive ANA 1280. Positive AMA M2 120. Been watching my liver enzymes since which was 2014. They have always been normal until 2021 when my AST and ALT starting fluctuating mildly. My ALP would go up to the higher end of normal but never higher so Doc always said no PBC. I did multiple ultrasounds only showed fatty liver which I reversed in 2022. I did Fibroscan showed no fibrosis. Doctor also told me you can have positive AMA and never get PBC. He said he didn’t think I would get it. I see doctor at UCLA once a year since I live in Hawaii. Anyways my concern is just recently my skin started getting darker. My legs, feet, arms and abdomen have hyperpigmentation like a bronze dark brown hue. Almost like a suntan but I don’t go out in the sun due to my Lupus. Also why would my stomach be tan? My appt is next month so I hope to get answers. What do you think? I know hyperpigmentation is a symptom.

[danaLL]

hey. I hope you get the answers you need soon. When I was initially diagnosed with PBC, a biopsy was finally ordered and the way they did it was so uncomfortable. I never wanted to do it again. Years later my labs were still not normal. I hepatologist kept pushing me to do another one, but I had such a bad experience with a 1st I didn’t wanna do it. I finally broke down and did it and they found out I had auto immune hepatitis on top of PBC. I believe the ANA marker can be an indicator for autoimmune hepatitis. I wish I would’ve done the 2nd biopsy much sooner, because I think there was substantial liver damage. In the meantime. I probably had it for 2 to 3 years before I was diagnosed. everybody’s body is absolutely different and I would agree that you definitely have to do your research, trust your gut and you gotta do what you feel comfortable doing. This forum is super helpful but it’s only piece of the puzzle.

[OdinsMom]

ANA isn't indicative of PBC but AMA M2 is. Was it AMA M2 that was tested and even if it was that's not very high. Usually PBC has 2-3 times higher as well as raised LFTs get you a diagnosis. I've done 6 biopsies over the years and would rather have one than a root canal any day of the week. It means not lifting, even a laundry basket, for a day or two afterwards but that's about it. Are you tired or fatigued? They are totally different. Fatigue is literally you can't do anything except lay down and fall instantly asleep without being able to be awakened. Extremely tired you can usually push through. Having had both I know the extreme difference. You are correct that it can be "dormant" and they believe a major stress factor kicks it off in most of us (death in family, divorce, major surgery etc). There are 100s of liver diseases, thyroid disease that can affect you. Perhaps seeing a rheumatologist who could look at other issues might help.