Newly diagnosed Mar 2016

[Delisle]

Just diagnosed this past week.  Trying to become familiar with all the details.  No symptons at all except liver enzymes elevated so had biopsy done.

[LindyRich]

You came to the right place.

I was diagnosed on 14 March.  People on here helped.

Whatever you do don't "Google" it. There is a lot of old, incorrect and irrelevant information on there. 

I did.  And I scared myself. 

Best wishes

[jiacheetah in reply to LindyRich]

I agree with LindyRich. The Internet had me crying in my closet for awhile until I got to see a specialist (Hepatologist). This was after a gastroenterologist said, "You have PBC, I can start you on Urso and don't worry if the drug does not work you can have a liver transplant" - that's is no explanation - so I googled PBC and was devastated and stayed that way until my Dr. gave me hope and then I found this site. I get tested again this month to see how the Urso is doing and I am hopeful.

[Delisle in reply to jiacheetah]

jiacheetah - trying to take everyones advise not to google anymore.  I can see this is the place to be for information. 💝

[Delisle in reply to LindyRich]

Lindy - looks like we're March partners.  We'll encourage each other!  💝

[butterflyEi]

Hello Delisle

Welcome to our group.  I am sorry to read you have been diagnosed with PBC but you will find plenty of help on here if you have any questions.

best wishes

[Djscallan in reply to butterflyEi]

Hi, I got diagnosed in Dec. Trying to figure out does and don't have been trying. 1 gastro Dr blew it off as no big deal. I have been telling him 2 years something was wrong. Only until blood work come back awful was I credible. Next specialist is sending me to a hepatologist. I have no classic symptoms.  Scared to death. Not a hard core drinker but love a glass of wine. Looking for true clarity. DJ

[Rockie]

Delisle.   We are thinking of you and hope you are still in early stages.  The itching part is for me the worst

[Brummi]

HI , Welcome to the group. These type of illnesses affect people in different ways. Take problems as they happen, don't look for them. Try to stay stress free saying that is easy but it helps in a big way. There is a lot of good people on here and they will help you in any way they can. Take care

[sharon7716]

Hi Delisle, contact the PBC foundation, they will have all the information you need, one thing I got from them that always puts having Pbc into perspective is that more likely to die with PBC not because of pbc. I like it to any other auto immune disorder I have good and bad days, it's just a matter of learning what works for you. I have been diagnosed 16 years now and still stage 1. Been told I have a healthy liver by Dr's.  

All the best Sharon 

[Delisle in reply to sharon7716]

Sharon You are a God send!  Yr words & history are very comforting. 💝

[Noidea63]

agree with all of the above especially not Googling even my GP said that when I was first diagnosed 2 years ago. Hope you do well and this site and PBC foundation great!

[Delisle in reply to Noidea63]

Noidea I'm taking yr advise & staying off  goggle.  The folks on this site are just what I need right now...thank you!  💝

[GrittyReads]

Hi Delisle,

I second all the welcomes - from all above - and just want to add that there is a link to the 'PBC Foundation' website at the top of this page.  If you click to connect, you will see lots of advice, as well as phone and email contact details to talk to their lovely trained advisors, if you want to.  If you join the 'PBC F' (it's free) you get access to much more info and a copy of their handy compendium, which is an up-to-date guide on all the main info on PBC. 

Another point which may help, is to try not to worry, and make sure you are looking after yourself - including having fun and treating yourself.  All autoimmune conditions thrive on stress and worry, so try to coddle yourself and keep doing things that you love, while also following guidelines on medication and  diet - comments on here and info from the PBC F will help with this.   Also, try to get enough fun exercise, whether it's the gym, running, dancing or whatever you like.  Most people with PBC, even those suffering from fatigue, usually find that some exercise really seems to help. 

Above all, keep on living life to the full.   

Take care.

[LindyRich in reply to GrittyReads]

Super reply.

I agree with your point about stress.  I moved house around the time of my first abnormal LFT. Tests have got slightly better results since then. 

So yes, cut out as much unnecessary stress as possible. 

I agree, live life to the full. Don't be a victim.

[GrittyReads in reply to LindyRich]

Thanks Lindy - you take care!

[Delisle in reply to LindyRich]

Lindy. All these wonderful messages are bringing my stress down!  God has certainly directed me to the right site!  Thank you. 💝

[Delisle in reply to GrittyReads]

Tks Gritty I'm heading back to my local rec center for pilates class tomorrow.  I am taking every message from this group to heart.  💝

[Angelsww]

Firstly don't panic. like others have said avoid googling. But DO look at the liver trust information and other official information such as that from Queen Elizabeth's and Newcastle transplant centres... They often have some really upto date information, not just on transplantation but on liver health and conditions in general.

Make sure your doctor has put you on Urso, as if you are a responder to the medication, it really can help to prevent damage to your liver. This is recommended by some of the leading specialists on PBC, from current research being carried out.

Many people never progress past early stages, and those of us that do, have lots of options.  Just try and live you life and try not t become PBC. it something that you have, it doesn't own you!

[Delisle in reply to Angelsww]

Angelsww. Your kind words are a big relief.  💝

[Della_Williams]

Delisle, 

First, welcome, and second, the fact that you have no symptoms is great!  I was diagnosed in 1999 with highly elevated liver enzymes too and was asymptomatic. The only reason I find out was because I was renewing my life insurance policy and they had to draw blood. Of course it all came as a shock when they denied me and the reason for my denial. I thought surely there was a mistake. 

To make a long story short, I never got life insurance, but that saved my life.  We have to find our silver linings in life and that's how my story begins.

I got the biopsy and was started on the medication available at the time for PBC and the following year switched to URSO and have been on that since.  I was diagnosed at stage 1. I hope the same goes for you or even stage 0 as I hear some people are getting diagnosed now. 

PBC used to be a death sentence 50 years ago so there's old information out there that's why just be careful when you google. As you become more knowledgeable about PBC and comfortable reading everything, you will google like crazy as I do, I just pick and choose, and weed out what I don't want but it doesn't scare or bother me. 

I do believe knowledge is power so ask your doctor lots of questions, start your own file at home and ask for copies of your labs, your biopsy results (pathology report). You never know when you will need to switch doctors, apply for disability or need all this information. Ask our group questions whenever you want. Just from reading the replies, there are a lot of great comments and wonderful, caring people here  I'm new to the group here too, but not to PBC.  I have a great support system at home, family, friends, Chicago support group, PBCers Org (US) and now this wonderful group. Oh, and a great team of doctors.  Make sure you are happy with them and they become partners in this journey.

My heart breaks because I wish people a long time ago had the medications and tests we have available today. My grandfather died in 1963 which I believe was from PBC. I can't prove it because medical files were destroyed in a hospital fire.  I am the only one in my family who has PBC and I have a pretty big family, but I am glad no one else has it. Hope it's the same for all of you.  Sorry for the long post  

Stay well,

Ivette, Chicago 

[LindyRich in reply to Della_Williams]

Long it may be, but from the heart.

[Delisle in reply to Della_Williams]

Ivette what an amazing gift this site is!  I signed on yesterday & had over 10 replies by morning.  To hear everyones experience is such a comfort to my heart.  I know there is a hidden blessing & I'm determinded not to miss it.  💝

[LorraineLouise in reply to Della_Williams]

Ivette, I live in a suburb of Chicago. I have been diagnosed about 6 months ago and having trouble finding a Dr. that is both knowledgeable and sympathetic of symptoms. I would also be interested in a support group in the area.

Any information in our area would be very helpful.

I too have realized that my mom passsed from this disease back in 1975. She was never properly diagnosed.

Thanking you in advance for any information you can give me.

LorraineLouise

[Robingantman in reply to LorraineLouise]

I see Dr. Charleton at the university of chicago he is the head of the Department ... very knowledgeable and kind . You will be very pleased with him

[LorraineLouise in reply to Robingantman]

Thank you so very much. I will look him up.

[liver-bird]

Welcome Delisle - I was diagnosed 2 years ago and I am not too troubled by itching or fatigue.  Today I have walked miles around the Science and Natural History Museums with my grandkids.  I take my Urso everyday and enjoy life.  

HealthUnlocked is a great support mechanism and so you are never alone - people here understand the condition and will support and advise you all they can.

Join the PBC Foundation, take your Urso and enjoy your life.  Kind regards. Diane

[Delisle in reply to liver-bird]

Hi Diana. I can feel the love from yr msg & picture.  Glad to see your having a wonderful day!  💝

[JennyCville]

Delisle~Welcome to this group. I was diagnosed in January after I had my gallbladder removed, and liver biopsied. I have multiple issues but am fighting to be well. I found that using this group for info, and NOT googling was the best thing for my adjustment to the new reality of having PBC. I am usually a voracious reader, but everything I read about PBC just made me cry. This group gave me hope, and perspective. Also, after just 6 weeks on the Ursodiol, my numbers dropped by 50%, which was AWESOME news. Do you know yet what stage you are at? I think it's a great sign that you have no symptoms...you have a much better shot at preventing damage. Looking back, my symptoms were profound fatigue and mild itching. Best of luck, and good thoughts to you.

[Delisle in reply to JennyCville]

Hi Jenny, What excellent news of yr numbers dropping by 50%!!  Do not know my stage yet but that is the first thing on list to ask my dr.  Think the first couple days were the hardest trying to not think about PBC so much.  Know there is a blessing in this somewhere just have relax.  Hope yr having a goid day

[MK3117]

Good Morning Delisle,

Like you I was diagnosed via biopsy after elevated lfts found in routine bloodwork.  Also have no symptoms, and am glad that the pbc was identified early.  My heptologist is optimistic that the progression can be greatly slowed and that the urso is highly effective.  I agree with all the comments about old, outdated info.   THis is indeed the best place for info and support-I've learned a lot on this site.  Be well!

[Delisle in reply to MK3117]

Hello MK, We are on the same time frame.  I read your initial post & so thankful our drs actually study our reports.  A simple blood test can sure detect so much.  So far this sight & folks have been amazing with positive info.  Also shocked at price of medication.  US / Michigan

[Juamcc in reply to Delisle]

I would think in Michigan that you could get Canadian I forgot it's only about $1,000 a year. I'm going to be in the donut hole by June. I went into that terrible fatigue about 3 months ago but now I'm fine I think. I'm in the process of leaving a big Medical Center with transplant experience but one of the new doctors came in as head of the department and I asked her what stage I was in and she said there were no stages.  I know Mayo Clinic has stages and I see it referred to here. She wants me to get a biopsy. I'm 77 years old and know I won't get a transplant.   I have to drive a ways alone so I switch to a gastro in my 2 miles away. I'm hoping to get a prescription in my hand so I can mail it to Canada. If I were to have a biopsy I don't think anything would change I would still be on ursodiol.  My finances are going to be strained. Medicaid pays for 56% of the cost and I pay 44% back to get to the donut hole those two costs are added together. If you are successful in getting a prescription in your hand and using Canadian pharmacies, email me at [e-mail]