New diagnosis - early stage PBC

[Danig]

Hi - just received test results from biopsy which was ordered due to elevator LFT and itching after ERCP. My follow up with Dr isn’t for another month but will try to move it up. I guess I’m wondering how you all cope. From what I read, I will take medication and not drink alcohol until I die (I’m 50) or need a new liver in about 7 years. So unsure why I would continue hanging in there and taking medication while being miserable waiting to die. It appears that stress makes it worse so I will need to quit my really great stressful job and get a crappy one while I wait around to die. So unsure of why you all think hanging in there and taking medication with no ability to drink (I have ~ 2 drinks/week) is a good idea as I don’t see any upside whatsoever. Thoughts appreciated. Thanks.

[Ktltel]

Danig,

I'm sorry to hear about your recent news that has landed you here on this site. But you have come to the right place. We've all been there. I know when we're first diagnosed it's a lot to take in. It is. It's scary. Please join the PBC foundation above. They can answer any questions you may have as they come up. I promise you, as you slowly wrap your head around all of this, it will get better. It will.

First, I just want to say, there are others on this forum who have had PBC for 15,17, 19 years and more. I don't know where you got your information about this disease from, but PBC isn't a death sentence. This is a slow moving disease and with medication even slower. It is said about PBC that one will die "with" PBC and not from it. Very many live as long as anyone without PBC. But, should it come to needing a transplant...well, there are ones on this forum who have been given that gift of a new beginning too.

It's true we are all different. Auto immune diseases many times run in packs. Because of that several on here have other issues along with PBC. Even with that being the case, you will hear from ones on this forum who have had "many years" between stages.

About diet and alcohol, eating healthy and sparing our livers anything that will compromise them further is for sure a goal to aspire to. Some on here who are in early stage PBC do have an occasional glass of wine I've read. Still others have made the choice not to drink. Maybe that's something you can discuss with your doctor.

If you have been diagnosed in a more advanced stage of PBC you are in good company here too. There are others in stages 3 and 4. But whatever stage you are in, there are medications, and there is hope. And here on this forum you will find great, great support.

While being diagnosed with PBC isn't a walk in the park, please remember that again, it isn't a death sentence. There is however a new normal to be found and settle in to. But "living" is very much a big part of it!

Soon many others will share their experiences with you. I hope you can glean some encouragement from them. I know they really helped me last year when I was first diagnosed. Again, sorry you have to be here at all, but welcome. Take a deep breath. And please remember you aren't alone.

Stella ❤

DX PBC 10/16

DX RA 4/17

DX DeQuervains tendinitis 7/17

[Hidden]

Iam sure you will get lots of replies of encouragement, some more knowledgeable than me Iam sure of that, but Ktltel is right the first thing to do is join the PBC foundation the link is above. The information on their site is up to date and backed up by the their medical team.. You can call or email them, I did 8 yeas ago when I was first diagnosed at 56 and was thinking pretty much the same as you are at the moment which is a scary lonely place to be. Without making that call I dont know how I would have coped in the first few weeks. 8 years on and my PBC is still stable.

I now have grandchildren I never thought I'd live to see and I only retired from work at the age of 62, then only because of the long journey to work and more to do with age than PBC. I worked in management, so it was not without its stress but like you I loved it. If your well enough and able to work I think it's good to do so especially if you enjoy your job, your employer can and should make reasonable adjustments to enable you to continue working if you need them too.

With alcholol it's a matter of choice , be guided by your doctors , mine never said I had to stop just have in moderation and I did for a few years, I enjoyed a nice glass of wine after a meal out , but since I retired I don't drink now and I don't miss it. You will find some comfort in learning more about PBC but do be careful with google , there is a lot of outdated misleading information out there. Take care.

[Ballymahon2]

Danig felt same as you recently diagnised contacted pbc foundatuon and they have been great met people who are living with pbc for years and doing well on meds diet etc

Dont google contact foundation for advice good luck be positive

[Hidden]

Who said that you need a new liver in 7 years? Well the drinking part is true for me. I wouldn’t consider a drink. But the new liver in 7 years and the speedy death thing is not true for most of us. It really depends on staging. Unless of course my dr lied to me

[Tetris73]

Hi, I’m early stages too and thankfully no symptoms yet. I’m on urso but my doctor did say I could drink in moderation. Having said that if my levels keep rising I’ll have to give it up completely which is okay too. I’m not suggesting it’s for everyone but I do have the occasional wine when I’m out with friends. If I was told it would take a few years off my life, I’d give it up immediately and be totally fine with that. I’d rather give it up than not be able to watch my kids grow up. Maybe have a chat with your doctor about it.

[Mofusdog]

I just had my second appointment with Dr. after being prescribed Urso - which may or may not be working ~ too soon for definite conclusion after only 3 months. But he was most optimistic, stating LFT numbers should/could return to normal. Having PBC will probably not affect my life span. (But when I reach 90 I am going to start drinking again.) Think of PBC like having high blood pressure. Take your medication, watch your diet, be kind to your liver (ok to have a drink on special occassions) and learn to tolerate the itching. Good luck to you. PBC is not all that bad.

[Hidden]

Hi Danig,

I can't add much more to the very good advice others above have given you - other than to say, I have been diagnosed with PBC for nearly 29 years.

It took me quite a long time to come to terms with having PBC - at that time I didn't have access to the Internet, so there was not much information around, and as it was a very rare condition here in Australia not many doctors understood it either.

Over time you will find, as most of us do, that, though altered, as indicated by Ktltel, life can be good - except for the daily medications, and the fatigue, I pretty much forgot I had PBC for 20 years or so, and continued on as I had done before diagnosis.

I hope this, and all the other advice you have been given by the members here, helps, as emotional stress can be just as bad for PBC, as is physical stress - no point me saying try not to worry because you will, as did all of us when first diagnosed, just know that over time that 'worry' will eventually dissipate.

Take care

Di

[shadowme2]

Finally someone is pissed. Until two months ago I'd never heard of PBC, I'm not dealing well with it. I'm still smoking and having what ever beer( I love beer) I want. I'm angry but excepting. ....Next test on the 27th. Whatever.

[gwillistexas in reply to shadowme2]

Shadow...may I ask why your pissed? Because of the diagnosis? That will not help nor change anything. I’m newly diagnosed & it is hard to accept, but in time as you gain more understanding of PBC it will become a little more bearable. It is definitely life changing but you can do it, as we all have learned. I didn’t want to accept it, but it is what it is. We can help it or we can hurt it. Prayers for you❣️

[shadowme2 in reply to gwillistexas]

As far as my diagnosis goes, I was at the Gastro doc for the first time, had a 15 minute appt. where he told me I have PBC otherwise known as Primary Biliary Cirrhosis and sent me on my way. I didn't ask any questions at the time because I didn't know any really. From this group I have learned what to expect, what to ask. One thing I may mention to him is it has officially been renamed Cholangitis, maybe a minor thing but at least I would know he's keeping up with any new developments. Thank you for prayers, patience, and understanding. I'll learn more on the 27th, may not like what I hear but at least I'll be better prepared. Best wishes to all of us!

[gwillistexas in reply to shadowme2]

I totally understand. My first appt with GI was a little more informative. He had a liver model & explained what happens in the ducts & why. And I had no questions at the time either, didn’t know what to ask. But honey I am loaded now, lol! I wish you the best in learning all you can. I’m still learning. Your dr should know Cholangitis is not cirrhosis. We will all take this ride together & do our best to uplift & support one another. Best to you❤️

[Sachin1234 in reply to shadowme2]

You are Not a good example for other pbcer unless you live 100 years smoking and drinking hard 😁..rock on gal and drink one for me too👍🏼

[shadowme2 in reply to Sachin1234]

My apologies Sachin, Don't intend to be a bad example for anyone. Just need to learn more and luckily I found this group as it's the only place I've found any info and encouragement.

[Sachin1234 in reply to shadowme2]

No worries I do drink in moderation and you should do the same..alcohol won’t help to cure any problem rather it creates more..