Newly Diagnosed

Newly Diagnosed

Hi - I had written a post introducing myself the day after I was diagnosed, but I can't find it anywhere, so I'm thinking I must have done it wrong.

Anyway, I'm Rebecca. I'm 41 and a single mom with a 9 yr old boy.

I have had high (flagged HI) liver numbers since 2010 and I brought to three famly dr's attention but no dr. I told did anything about it. I started seeing a new family dr. recently,  and he followed through with more testing but couldn't find anything. He referred me to a specialist and she ordered a biopsy. Had my biopsy April 6th and was officially diagnosed April 20th with PBC. It was also queried on the report that I had Autoimmune Hepatitis. More testing is being done for that.

For the first few days I cried a lot, and thought about my life and re organizing my life...but also once I stopped crying, just numb. I haven't begun to accept it or process it yet.


I've since done a lot of research and learned as much as I can. I was put on URSO immediately and I'm taking 1500 mg / day.

I'm scared. I have a follow up appt. June 23rd after more blood tests so my dr. can monitor the progression of the PBC. My liver biopsy staged me at stage 1-2.

I'm hoping to learn a lot from you guys - and to turn to you for support as I try to process this (and beyond)...

(the photo is my family)! :)

28 Replies

  • I'm sorry you are going through all of this. It's been a long journey for you.

    Take heart there are lots of people on here who have gone through the same emotional roller coaster. 

    I was recently diagnosed myself and felt the same way you do now.

    First of all don't panic. PBC is a slow condition. There is also a lot of old, incorrect and misleading information on the Internet. It's a scary place to start. Most of the symptoms on there will never happen to you. If you join the PBC Foundation you will be able to access sensible, upto date information. There is also a help line.

    There is also a compendium you can download so you can keep referring back to it.

    I have had a great deal of encouragement and support from this forum.

    It takes time to come to terms with the diagnosis. You have let the tears out which is good. Take special care of yourself. 

    Keep posting

    Best wishes

  • Thank you for your words.... I think I joined the foundation, I thought I did when I joined the forum but i'll double check...I'd love access to all that information :)

  • Hi Becca. You've come to the right place. Lots of good information from both the Foundation, The Liver Trust and participants on this forum. 

    I'm new to the world of PBC myself but luckily I have a doctor who is really on the ball. It's such a shame it took a few Drs to eventually sort you out. It must have been really stressful. 

    Linda is spot on about the don't panic and don't spend time on Google when there's more informed material available. 

    The picture of your family is lovely so enjoy them and come back to the forum regularly - it really is a font of useful info and support. Adele

  • thank you - I will :) this is where I need to be - and I look forward to getting to know you all better - as we walk this journey together ...

    I feel calmer now - although the first week was a lot of tears and panic and thoughts of death and the 'after'...but I'm going to choose to not think about those things and not panic.

    Thanks :)

  • Hi there, I have just joined the forum myself. I was diagnosed just before Xmas 2015, and like you I was filled with all sorts of emotions and fear. 

    I went on just about every single Google site... A big mistake as I scared myself witless! My Consultant had some strong words to say about it too, and reassured me that these sites are outdated and have very little truth in them. PBC is a very slow process and most people will die WITH it and not die OF it. He said that he's been a Consultant in this field for nearly 25 years and has never had a patient die of PBC! So...I'm feeling reassured! 

    Hope that is reassuring for those out there who like me, go through times of worry and panic. I too, have a young family and I want to be as healthy as I can for them.

    Here's wishing you all, the very best of health.

  • that is very reassuring!!!!! thank you! Sorry you were diagnosed as well..  .but I'm glad you're here!

  • HI there.  I just wanted to say I was diagnosed 13 years ago, I had a 3 month old baby boy and I'm still here, still symptomless, still living as I always have done!  As a previous poster said, my consultant, Professor Neuberg, said that most people die WITH PBC not FROM it.  Keep that in mind.  PS your family is beautiful.

  • thank you!

  • Hello Rebecca!  First of all what a handsome boy & puppy dog:).  Yes you have found the right place for support & current information. Once you start surfing the net this can be scary and worse than it is.  I am also newly daignosed (60 days) and truly depend on the kind words & longivity of other members.  There are lots of blessings waiting for you!!  Peace to yr heart 💕

  • thank you so much! I'm so glad I'm here - I'm feeling more relieved already!

  • Seeing the photo of your dear beautiful family really touched my heart. Please know you are in the early very treatable stages of the disease. Urso has been proven to control PBC, and new drugs and treatments, which I pray will eradicate PBC are being researched as I type. I am so glad you found this forum. Through the kind wise words I have found here, I have changed not only my diet and exercise routine, but also my attitude. I owe the posters so much thanks! If I may advise, please don't worry about cleaning the house, etc, when you are blessed with such a wonderful son and darling dog. Play with them and not the dust bunnies. Put the worries of this disease to the back of your mind as much as possible. It sounds like you have found good medical care, which is so important! There is so much life and love ahead for you, maybe not so much salt or rich foods, but hey! I'll take the hugs over a sweet roll any time.

    You are in my prayers. Wishing you hugs and laughter!

  • Thank you for your kind words! and yes, please advise :) I have thought a lot about life since getting this diagnosis - and most of it is about freeing my life from the stressors that hold me back, making sure to laugh more, love more, hug harder and take the time to "be present" in moments instead of doing and rushing - just 'be'.

    I am lucky to have good medical care, and I have a wonderful psychologist that I see regularly (have for years). I love my beautiful little family, and my goal is to take more time to appreciate it, rather than let all the little petty things get in my way.

    Thank you ! your words are healing :)

  • Hi, Sorry to hear you have PBC. To have PBC is not as bad as it seems, the treatment is very improved these days. A few changes to your life style and keep stress down, easy to say but it's a big help. There is also a lot of good people on here that will always be ready to chat, take problems as they happen don't look for any .Good luck

  • thank you

  • Love the photo. I was diagnosed in 2012, and I literally drove myself crazy with Am I going not to live long, etc. I feel your pain. However, I have been on URSO 1200 mgs since then. I saw the top PBC  expert in NYC  she said Urso is keeping me asymptomatic, YAY I was sooooo relieved. She is one the the few leading researchers on PBC in the United States, and I trust her completely. My point is also that as more research is done we are seeing that it in many cases NOT a death sentence!! Also in the USA there is a new PBC drug approved and coming out soon....URSO is very good for me....everyone is different, I wish you nothing but good health and happiness and I absolutely understand how u must be feeling.    Just keep seeing not a GP but I recommend a Liver specialist only, they just know more in my opinion. Enjoy life and your wonderful family......

  • thanks :) ya my GP referred me to a specialist - she's who ordered the liver biopsy - I'm seeing her regularly now. I'm on 1500mg URSO daily. I'm interested to see how my body reacts to it in the upcoming blood tests.

    That's great there's a new med approved in the US (what is this one for? does it do the same as URSO?). I'm in Canada so hopefully it'll be approved here soon too :)

  • Yes new drug will be approved should be approved quickly here in the US, It's also for PBC , clinical trials have been very positive and it was placed on the FDA's fast track approval process. My Dr. told me I didn't need a clinical trial bc thank goodness I am asymptomatic, and she kept me on the URSO which for me, is working. I believe it is for the people who don't respond to the URSO. Again, all the best and stay warm, my neighbor to the North!!!

  • It is on fast track here in USA Not approved yet,  however in my case my Liver specialist said if URSO is working, which in my case it is...I don't need the clinical trial which she is heading in NYC.... take a deep  breathe, enjoy life, try not to get too caught up on many of the Articles on the internet about PBC so much of it is way outdated, and not accurate anymore!  My Dr said I am not going to die from PBC but from smoking !!! So I must quit!!!  I will do it!!  Good luck the PBC foundation has the correct PBC info and I would trust that sight mainly, bc it's current.

  • Hi. Who is your doctor? I am still in search of a PBC expert in FL.

  • My Doctor is in NYC Dr. Nancy Bach, Mount Sinai Hospital Liver Specialties Dept. ...Have you tried Googling for a PBC expert in PBC I Florida?? Best of luck.

  • First let me say - what a beautiful family. With a young son I understand your concern and fear. My children are older but I have a son that has been ill since birth and nothing draws more on our emotions than the people we love.

    By all the other posts, you can tell you are not alone. I was angry at first because it took 3 years before I got diagnosed as my dr. kept scratching her head but did nothing. I would find out eventually - Sept. 2015, that I had this weird disease called PBC and my biopsy said I was Stage 2.

    It does not matter how old or young you are because no one wants to hear that they have this or anything else and because I did not find this site right away my fear grew with everything I read. We all want to stick around as long as we can.

     But there is so much hope and when you read what others say, you soon find out that many people have been living with this disease for years. It was the best thing I read. And while I hope I am one of the lucky ones where the meds keep working, I have learned not to dwell on it everyday and enjoy my life. I am also on 1500 mg a day.

    So - know the group is here for you, take the Urso and continue to enjoy your precious little one - they don't stay young long!

    Best, J

  • thank you :)  it helps that I'm not alone. Because not many people even know about the disease - my family doesn't know much about it so it helps having a place I can go to where people know.

  • Hi Becca - welcome to the PBC club, you will find lots of support here from folks who understand.  

    What a lovely son you have - he looks very devoted to his dog.  

    Try to take all this in your stride and remember PBC is called a "glacial" disease because it usually moves very slowly.  Eat well, get plenty of rest and take your Urso - it has brought my LFT numbers right down and some of them are in normal range now.  Most important of all, put on a happy face and enjoy your life.  

    If you join the PBC Foundation, you can get appropriate advice from their advisers at any time.

    Take heart - you will be saying this yourself to other newly diagnosed and frightened people in future.   All the very best to you and your lovely family.  Diane x

  • thank you...

    this weekend - I opened the curtains (which I rarely do because sun highlights dust lol) but this weekend I opened all the curtains, lit some candles, and spent time with my boy and dog - just 'being' instead of always 'doing'. it was nice :) And I got some extra rest Sunday morning which was fantastic and much needed.  :)

  • That`s the way Becca - you are more important than the dust.  Glad you enjoyed the important things.  Keep in touch.  Diane x

  • Many outdated & False Information on Web sure. At least "C" in the PBC is no more Cirrhosis" but called Colestasis now. Second There is a Medication that slows the Progress. If that does not help or so....There are other Therapies in the Pipeline. OCA (Ocaliva) will be very probably the next Therapy. There are few more in the Trials. Don't worry much....but do keep care of your Health from now on: No Alcohol, lots of Sunshine...good Food. Help your Liver :)

  • HI - Yes I read about the name change :) I'm taking URSO already - but won't know it's affect (other than an upset stomach) on my liver #'s until end of June when I go back to see my dr.

  • just joined the PBC foundation! Received my Disc right away! looking forward to watching it

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