Hello guys, I am new to this all and I am trying not to get discouraged to say the least. I am a married mother of six, and I am only 35 years old. I just recently got this diagnosis after seeing my GP about many bouts of fatigue and joint pain. We were looking to rule out Lupus, and confirm a diagnosis of RA before she could treat since RA was the diagnosis I had gotten from the VA many years ago back in 2011 or 2012. I wonder if I have had PBC all of this time and it was just misdiagnosed since my rheumatoid factor was negative with this round of testing. I was told that I needed to have a liver biopsy to confirm although all of the serological evidence is there and I am symptomatic, but I have read that I can get what is called a fibroscan. I am confused, frustrated, tired, and drained. My body hurts, and I have been told that I can take nothing. This is all leaving me emotionally inept at this point, as this will probably be my last week of work because I can't continue to call out the way I have been. Any and all information and suggestions that you have are welcome, as I could really use all of the info that I can get at this point. Thanks in advance!
One worn out woman😪😪
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PBCNewbie32
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First of all, while I'm sorry you have PBC, I'm glad you found this site. You will find quality information as well as peer support. And we can help you get through this... the initial shock and diagnosis is something we've all gone through. Not feeling well enough to work, worry about your kids etc... THIS is a lot all at once to take in. Break it down to step at a time..
Try not to catastrophize.. there are treatments of PBC and exciting new research in the pipeline that you will benefit from. And feel free to post here as much as you need to unload some of the burden from inside your head. We care and we get it.
You say that blood labs point to PBC.. so do you mean AMA test and elevated Alk Phos in your liver function blood work?
Regarding biopsy, there are times when it is used to rule out other issues
(From what I understand) But more and more experts are leaning towards newer scan technologies.
All that being said, I think it's reasonable for you to ask dr. Why the biopsy recommendation.
Here is a great document that methodically lays out diagnosis and management issues. Check it out.
Also, you should join the PBC Foundation (it's free). They sponsor this forum on Health Unlocked but have a great website with resources and info on PBC. Also, if you are in the U.K. You can call them.. they will talk you through!
Hi Eileen, You said it all! Just to add, for PBCNewbie32 you can call them from anywhere without cost preventing it. PBC Foundation will arrange Skype with you for example. You can message Robert to arrange it.
You have quite enough to deal with don't you? Sorry you have to be here at all but you have found the right place. Normally PBC can be diagnosed on two criteria.. (1)An elavated Alkaline phosphatase, and (2) A positive Anti- mitochondrial enzyme. This requires having bloodwork done which you may have already done. Take a deep breath...... There IS help out there and lots of support too! 😊
A Fibroscan will show the stage of liver fibrosis\disease. An MRE will too. Either one of those tests will help your doctors know where you are at with the disease. A biopsy used to be the gold standard for diagnosing PBC but not anymore. Doctors still like to have it done to rule out other liver diseases as well. *Case in point, I had a biopsy in 2017. It came back "negative" for PBC. BUT, I "did" have (1) An elavated Alkaline phosphatase and also (2) A positive Anti mitochondrial enzyme (the 2 criteria for a PBC diagnosis). So they started me on the medication for PBC anyway. 2 1\2 years later, I had an MRE which showed mild liver fibrosis. So, I did indeed, and do have PBC. The moral to this story is..... You can't rely on a biopsy alone. I don't care what a doctor tells you. Many doctors are still old school about PBC.
About the disease.... It's a very slow progressive disease where our own bodies are s l o w l y destroying our bile ducts. They believe it's an autoimmune disease. So, the slow destruction of our bile ducts will then over time cause liver fibrosis, which inturn will eventually cause liver Cirrhosis. There is no cure BUT, there are medications to help slow the disease down even more. Symptoms differ from person to person but, muscle aches, dry eyes and fatigue are really common it seems.
You are young. This disease usually, not always, seems to be found in women (and some men too) between the ages of 40 - 60... more so in that 50 to 60 range. I was diagnosed at 57 but had symptoms for 10 years!
Some women progress faster than others but, usually with medication, this is slowed down.
Many women and a few men on this forum will pipe in soon and fill in the gaps I've left out. Or, correct me if I said something wrong here. Either way, you'll find lots of support here!! 😊
So, like I said. Take a deep breath. Try not to panic or rush to Google (some scary stuff there and some very inaccurate too.) But ask your questions..... I promise, you will get answers here. ❤ Welcome to HealthUnlocked.
Stella
Diagnosed PBC 2016
Symptoms, Fatigue, dry eyes, and joint pain.
😜Lol.... From Google below👇
The diagnosis of PBC is based on the presence of at least 2 of 3 keycriteria including a persistent elevation of serum alkaline phosphatase, the presence of anti-mitochondrial antibodies (AMA), and liver biopsy histology consistent with PBC.Jan 11, 2014
Yes yes to all that Stella shared. Stay away from Google as hits show up that are vastly out of date and not helpful!
Hi PBCNewbie32, you will be pleased if you message PBCRobert. He can arrange Skype contact for you with PBC Foundation. He is site administrator here on HU, educational lead in PBC Foundation, and son of Collette who is CEO and founder of this organisation following her own diagnosis of PBC over 20 years ago. People at the Foundation are the kindest and most knowledgeable you can find. It would take all day to say how useful they are to us, so save me the day, get in touch with them. Keep in touch with us. Best wishes
I’m so sorry to hear but not surprised that you’re worn out and emotional, the diagnosis route to PBC can be a tough one for many of us (and few of us are so young or have 6 children). However, I’m really pleased that you’ve found this site, it can be very supportive and informative and certainly was for me around my diagnosis time.
From my understanding, staging and biopsies are not routine in the UK so where you live may affect this aspect of diagnosis. I’d like to reiterate that you join the PBB Foundation as an excellent source of information and support. Not only do they have the website and app but they can be contacted by phone or email too (and in the UK sometimes run “living with PBC” days round the country plus there are local groups). Robert has a couple of “pinned posts” (above right) which are worth reading too.
Here’s hoping that you have lots of support around you and that things go well for you, warm wishes, Cx
All of the above replies are wonderful. One question though...has the doc started you on a Urso or is she waiting for the biopsy results? A biopsy is not foolproof, but some docs still use it to confirm diagnosis. That is what happened for my husband, especially since PBC is so much more rare in men and the specialists wanted to confirm their lab results. Fibroscans have since been used more extensively and he has not had a biopsy since confirmation of diagnosis. He does get regular MRIs and ultrasounds because he is stage 4. His PBC was caught much later, unfortunately, but the Urso has slowed it down and his numbers are better. It does not help with the fatigue though, which is something we manage daily. The docs, and many people on this site, and on the Facebook support groups, encourage healthy eating and regular exercise to help combat fatigue.
Don’t let Google scare you. The suggestions above about accessing the PBC organizations are correct and are invaluable. The biggest favour you can do for yourself at this point, other than gathering info, is to adjust your expectations of what you are able to do. It sounds like you have a very busy life, but you have to learn to manage the fatigue. Please accept whatever help is offered, and don’t be hard on yourself if you can’t do what you used to do. Listen to your body! Focus on priorities and just do the best you can. I do hope you have good support around you, as it makes all the difference. PBC is hard for others to comprehend, as you will usually ‘look fine’, even when you feel like every drop of energy has been sucked out of you. Educate those around you about this disease, and enlist their help when you need it!
Thank you so much for all of your kind words! My results were confirmed through lab results, but my GP had no experience with the illness itself so she referred me out to a gastroenterologist. He is the one who wants to do the liver biopsy to confirm, but I am 100% sure that I don't want to go through with a biopsy or anything too invasive for that matter. I get that they may need to stage it at this point, which I definitely understand and desire just for my own mental and emotional wellbeing, but I prefer something non-invasive. I think I'm going to request a fibroscan just to air on the side of caution.
I am so glad to hear this! The way the Dr. described it to me was like a punch in the kidney, and that there was a 1 in 500 chance of significant hemorrhage. He then proceeded to tell me that the latter meant the chance of death. He scared me half to death!
I had my diagnosis in 2016 after a biopsy to rule out other concerns. It was uncomfortable but straightforward and the worst bit was waiting for the results which confirmed I had some scarring but no crossover conditions, thankfully. I started out scared and really worried about the future but My PBC is under control now having responded really well to Urso. I take pain killers when needed, chlorphenamine for the itches, drops for my dry eyes, artificial silava for dry mouth and try to control the fatigue through diet and gentle exercise. I have been to a PBC foundation information day and connected wth my local PBC group for support. Like others have said, everyone’s journey is different but you can make informed choices, ask questions and get positive information from this site and the PBC Foundation itself. I wish you all the best and hope that all the great responses you’ve had help you decide the best course of action for you.
Remember, it is his legal duty to tell you to tell you of every reported side effect and undesirable outcome of any medication or procedure, and not his opinion that these are likely to happen to you. Think of this, if you were under the same obligation to warn yourself of possible risks, you'd be getting into bed at night saying "if I go to sleep there's a chance that I won't wake" and when you wake "if I get out of bed there's a chance I may fall over and break a leg" and when you leave the house... etc. You wouldn't bother to do it because you know the odds make it very unlikely. He has to tell you inspite of the same, it isn't likely.
I wish i had 6 babies before diagnosis of my PBC 🤦🏼♀️ I think you’re a lucky woman. Do not stress yourself and take your drugs . You’re not alone. We are here to take care of each other here
Awe, sweetie understandably you're upset. You probably had it for awhile, it is a disease that isn't diagnosed in beginning stages.. know that they have come a very long way in the 8 yrs since my diagnosis.
The pain is not nice, it's not easy to deal with. Hot soaks, for now.
I know this frustration, because I have been along almost the same path.. I'm doing well and coping.. it will get better as your Dr does tests and the meds are set.. until then, one day at a time
Not sure if someone else mentioned, but a liver biopsy is no longer considered appropriate practice for the purpose of staging, only where it is necessary for the small minority of people who cannot be diagnosed on serological evidence. Biopsy cannot stage in any event because the small tissue sample taken will not be representative of the status of the entire liver, merely of the sample. I see some people elsewhere recommend you to have this procedure. I'd be speaking to Robert or Collette at PBC F, or read the layman's guide to the protocol/guidelines for diagnosis and treatment of PBC on PBC F website for how you could respond to the hep who says you need a biopsy. Ask her to help you understand her reason for suggesting this procedure in light of these guidelines? On this site, from PBC Foundation, and with help of their free PBC App, you will quickly learn the ropes, and it will no longer seem like a load to think about or worry that you have missed something. I think Eileen covered this already. Never mind.
Biopsy is also used to diagnose overlaps of conditions if your histology suggests it. Sorry to bring this up but some folks have more than just pbc so a biopsy is needed to confirm one way or another.
While invasive, it might be needed to get the proper diagnosis.
Think about it or get a 2nd opinion from a liver specialist to see if a biopsy is needed.
I am sure once you find a doctor, preferably a liver specialist (hepatologist) you can work with/trust, everything will be fine.
Ninjagirlwebb did well to point out cases where it is advisable to have a biopsy and to reassure you how she was initially reluctant and needed some persuasion to accept it was the right course for her. She has replied elsewhere to others explaining how straightforward the procedure was. If I remember rightly, she had a burger on the way home after it!
You have a great memory...I was starving after so I went to a nice restaurant, had a burger, sweet potato fries plus coffee & dessert!
My biopsy was sonogram guided, done at the hospital, I didn’t feel anything because I was under anesthesia during the procedure. By the time I woke up, I was already in the recovery room. Nurse asked me what I wanted to drink & eat for a snack. Had to lie on your side for a few hours while they monitor your vitals before sending you home. The nurse called me the next day to check on me. The scary part was awaiting the results. That was another ordeal in itself.
I didn't remember the dessert - if ever there's a prize for eating the most heroic meal after a liver biopsy, I'm nominating you for it! Well done you!
I don't think I mentioned that I had dessert too on that particular post. So your memory serves you well. Major comfort food for me => burger, sweet potato fries, dessert. Yum!
I bought some sweet potato nachos with hemp seeds earlier today after my B12 injection!! Not in the same league, but good. I haven't eaten meat for a very long time but I keep getting a whiff of your sizzling tasty burger and I want one very badly. Probably won't sleep 'til I had one now and that'll be a wait, they don't make good ones here. You know earworms? It's like that, but much worse, a tasteworm teasing me like the itch.
I was like you; didn’t want the biopsy though the Gastroenterologist requested me to have it done. He got tired of me, saying, “No” so he sent me to a Hepatologist who convinced me to do a biopsy. My case was not straight forward so a biopsy was warranted.
What do you mean, you can't take anything? Meds to relieve symptoms? I'm on numerous meds. Have tried So many over the years. I was diagnosed at 39, I'm turning 50 this year. Having a biopsy isn't as bad as imagined. At Least for me, but I've had a lot of procedures. Try to stay as active as you can while resting when you have a fatigue episode.
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