r

[lainey67]

does anybody on here no if anyone with pbc for longer than 20 years needs a liver transplant as im under the impression after 20years you do and is it possible to stilll stay in the early stages of pbc after 20years can anybody please help as this is really worrying me

[Hidden]

Hello lainey67.

I can't answer your question as I've not yet had PBC diagnose for that long, only just gone 2yrs unfortunately.

I actually don't try to think about the future, just try to get by day to day.

It is possible that over time the PBC might just enter a remissive state, it may not but it also might not progress any further.

It is a scary thing to have and think about, I know also but I see it that the more time we spend on worrying about how it could become, surely then we are going to perhaps deprive ourselves of living for now?

I also think that if one tries to keep themselves in tip top condition as is wholly possible then maybe, just maybe the PBC will be kind on us.

You didn't say how long you had PBC as I'd love to know by the way, sure a lot of others on here would too.

Regards.

[mumofthree]

I have only been diagnosed just over 2 years so not certain myself either.

I may be wrong but I was under the impression that you may need a transplant if you developed the cirrhosis and the liver became badly damaged. My consultant told me that it may never develop into cirrhosis.

Maybe your consultant could put your mind at rest.

Be positive, make the most of each and every day and try not to worry too much.

[lainey67 in reply to mumofthree]

Thank you mumofthree i went from nearly having a break down to being really positive,i think with me it was when the consultant mentioned a cat scan to see if i had any other diseases , i am so scared they will find some thing else,I think it takes time to come to terms with this one.

[lainey67]

Hello Peridot thank you for your reply.I was diagnosed in september,i had only gone to the doctors because i was feeling run down,he did some blood tests which came back slightly elevated.I was told by the consultant that there was no stigmata to chronic liver disease and that my liver,kidney spleen ,had normal appearances and that all they found was a small polyp on my gallbladder and slight prominance of my pancreas.My consultant seem to think it was a problem with the pancreas and not my liver, so i had an mri which showed a raised lymp node,he then got the ama test back and told me that he was very sorry but i do have liver disease.I had gone from thinking i had liver cisease to being told that i didn't and that it was my pancrease and then being told i did.To be honest it didn't all sink in at first as i was just so glad that i didn't have cancer of the pancreas which i thought i had.I spoke to a few people on the phone and no one had an enlarged lymp node on the pancreas due to pbc so i was frieghtend to death.What i dont under stand is my bloods started to improve before i went on urso,and that i think was due to changing my diet and stopping smocking,i just use the electric cig now.Since being on urso my bloods are nearly normal and my periods are now back to normal as i was told i was going throught the menapause.I have changed my consultant now as i felt that was for the best,i am just curious to why both consultant's have both said that they will try and get me through the next 20 yrs with out too many problems,so now i am woried that i will defo need a transplant in 20 yrs time.I have spoke to some one who has had pbc for 20 yrs but nobody beyond this.I was also told there is a link with smoking and pbc ,i dont if anyone else has been told this,i am just up and down at the moment one day i feel positive the next i am anxious all day.I am just so glad i found this site you all sound like lovely people.xx

[Hidden]

Hi Lainey, I have 6 gallbladder polyps, if they are still in situ in 3 months time consultant wants me to have my gallbladder removed. Did they make any comment about your polyp.

[lainey67]

Hi donkey after i had an ultrasound they told me that i had a small one,i then had an mri scan and nothing has been mentioned since then.My GP said he isn't worried about it and the consultant hasen't said any thing.i dont under stand it i am surpose to have one yet on results of the ultrasound it said liver, kidney, gall bladder,and spleen all had normal appearance ,it may be when they get to a certain size they have to take it out.I am seeing my GP on tuesday i will ask him,he is a really good guy and will explain it to me, i will let you know what he says.

[wendyh]

i too have been told that i have polyps in my gallbladder and i also have one in my stomach, apparently a friendly one. diagnosed PBC october 2010. maybe there is a connection with polyps and PBC?

[LindaRose]

Yes - you can have PBC for the whole of your life and it may never get any worse, certainly not to transplant stage so stop worrying ! most people die WITH PBC not of it. You should be checked on at least once a year though for any changes, but mild changes up and down are normal and drs look at an overall picture. STOP worrying about it !!

[lainey67]

Thank you every one for your help, I was doing really well and stopped worrying for a while so i dont know why i ended up all anxious again.I am pretty lucky really as from mri scan and the fact that my bloods were improving before i went on urso and i am only in early stages i should be in a good position,i think i just fear the unknown xx

[HeidiLucy]

I have the same fear. I keep reading "20 years" in my Internet search. Why? I'm 43, so that does not workout very well for me. I'm in stage 2. I started URSO last Oct and have responded really well to it. My blood work is back in the normal range and my itching has been reduced.

Another question. Just curious. My liver enzymes are back to normal and my bilirubin is in the normal range. But, my bilirubin increased from .7 to .9 (.1-1.5 normal range). This is my third blood liver panel since diagnosis. Does the bilirubin number normally move around?

Thanks,

Heidi

[Hidden in reply to HeidiLucy]

Hello Heidi...

Well if you state you are currently having normal LFTs along with the bilirubin then I'd def not worry about anything currently.

I was diagnosed PBC Dec 2010 and started on urso and it has taken just over 2yrs for my LFTs to be the best reading so far - and they are still abnormal BUT deemed normal for one with PBC according to the doc (as they apparently use a different chart for people like us due to the ranges being different).

I did once check my bilirubin and though there has been a bit of shift in the normal range by a point or 2 mine have always been pretty good and well within normal so can't say there. BUt I think with PBC anything is possible.

I know when I had 3mths where I thought up to Feb 2012 I had done great in myself my LFTs came back on an incline! Then May 2012 they were better than the first fantastic reading I had 2mths after starting on urso but I think possibly due to the fact that the mth prior to having the bloods I did take a milk thistle daily. I then had another downer Oct 2012 so Dec I started on urso once again and have been ever since. I now reckon the reason I had the great result Feb just gone was due to taking milk thistle.

Also how do you know you are at stage 2? I just find this staging so puzzling to be honest. Personally I'm not bothered. As long as the bloods are doing fine and I feel fine with no further symptons as not got more than the dreaded itch at night then I couldn't care less about that. I've no intentions of having a liver biopsy to find out if it was ever to be mentioned as at the end of the day I'd still have PBC regardless.

I was 46 when I was diagnosed so for me if this '20yrs' is something that has been mentioned (tho' I've not read that, I have read a bit differently but switched off) so for me if I do stretch to being 66 then I somehow think I might prob not bother. Given I spent from aged 22 wondering if I'd reach my 43rd birthday as my mother died suddenly at that age (not PBC, brain haemorrhage) and everytime I had the slightest headache it made me wonder so I am not prepared to spend anymore time wondering if this PBC will get to me (tho' something will eventually).

[Hidden]

Hi lainey67,

I was diagnosed with PBC 22 years ago and have been on Urso for the last 12 years - my latest Lfts and billirubin were fine. As we all know, PBC does not follow a predictable path of progression in each of us, so some may have to have a transplant. But. for me, the possibility of a liver transplant has never been raised by my specialist, in fact, he believes that I will die from something other than PBC.

Hard I know, but try not to worry too much (stress only makes things worse)

[Hidden in reply to Hidden]

Just to say DianneS, a big thank you for your contribution here. Sure everyone on here who is reading this will feel a lot of hope as I surely do though I don't dwell on the thought that it 'could' lead to liver transplant.

You didn't state how old you were for a better gauge so hope not being rude there but I have to say you have just made my day. Know my husband will be overjoyed to hear there is someone out there who has had PBC diagnose 22yrs ago (I'm only 2yrs., I've 48 currently, been on urso 2yrs).

Best Wishes.

[Hidden in reply to Hidden]

Hi peridot,

Sorry, I should have put that information in - I was 44 when I was diagnosed and I am now 66 - when I was first diagnosed I was told I was approximately mid-way through the cycle of PBC, and would probably need a transplant within 5 years (must say that scared the pants off me) but that never happened - one of the 'lucky' ones I guess

[WendyMarie]

Hi Lainey, I was only diagnosed 3 months ago, but I can answer your questions, because I asked these same questions to my hepatologist. This doctor did his intership under Dr. Gershwin,@ University of California in Davis, CA, & worked with Dr. Bowlus & Dr. Kowdley, which are the world renowned "Gurus" of PBC. He told me YES, you can remain in stage 1 & never progress, IF you are a responder to Urso, & your ALP stays under 200. My ALP has fluctuated between 150-200 for @ least 8 yrs. that I am aware of & have not been on Urso, until now. I was told it is possible to have a benign form of PBC, & it may never progress,even without taking Urso, & if it did, most likely it would poke along for 30-40 yrs. Meanwhile I started taking Urso & will monitor blood test every 6 months. He told me, should I choose not to take the Urso, later, in the future, we can talk about it, but don't quit without talking to him first.He said although no one can ever predict how the immune system will act, that he thinks I will be just fine. He also said hundreds of people walk around with PBC & never know it, & it may NEVER progress, or if it does, the Urso, will prevent it from progressing. Liver transplants, due to PBC, is not common, due to the Urso, it rarely reaches that stage.

[lainey67]

Thank you so much to every one for your advise it is really nice to know that you are not alone.Heidi you mentioned about billirubin ,i know it normal for it to go up and down.My doctor likes to keep an eye on my bloods i find him to be more helpfull than my daconsultant,any way he took my blood test last week and even thoe my bloods had come down alot in 3 months my billirubin had gone up from 7 to 8.I asked him if i should be worried he said that this is common and that if you tested every ones billirubin each day it would allways read different each time so it is common to go up and down.Thank you Dianne and Wendy you have really helped me xx

[lainey67 in reply to lainey67]

Thank you Linda rose you are right i really do need to stop worrying

[HeidiLucy]

Thank you everyone for your responses. I really appreciate the information. It brings me comfort!

Periot- I had the liver biopsy because although I had high liver enzymes, positive AMA, itching for several years, my alkaline phosphate was normal. My gastro. doc has only one other patient with it, so it was not a diagnosis he wanted to make without biopsy conformation. I was all for it because I was still in disbelief.

I was diagnosed Stage 2. This article has a simple diagram of what the stages look like on a cellular level. It gave me a good visual of what was seen on the biopsy.

med.upenn.edu/gastro/docume...

Heidi