Has any one diagnosed with PBC gone untreat... - PBC Foundation

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Has any one diagnosed with PBC gone untreated for any length of time?

Question?

Has anyone here after being diagnosed spent a significant time without any treatment?

I ask because I first had an allergic response to Urso then when we tried again I was classified as a none responder. So I lived with the PBC diagnosis for five years without treatment. I now am on Ocaliva. Just wondering how many of us have gone extended periods without treatment.

Kathy

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Kathy,

What stage were you in when you were first diagnosed 5 years ago? What stage are you in now?

My hepatologist told me PBC progresses slowly.... and with URSO even slower.

Stella

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I was diagnosed with PBC 14 years ago at 29. I was told it was a slow progressive disease and I was more likely to die with it than from it. As a mom of a young child I was very flippant about the diagnosis and ignored it. I was given urso but it made me feel worse, so I stopped taking it.

9 years later I became extremely ill and 10 years after diagnosis I had a liver transplant. I'm not saying this to scare you, but to say please keep up with appointments and live with any meds they give you.

I'm great now but do have side effects from meds but it's a small price to pay. I was young and thought I was invincible, didn't take it seriously. I wish I had.

Take care and keep well

Lisa x

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Hi Lisa, I hope you are doing well. It's a shame how some doctors or even specialists are not very concerned or educated on PBC. I just saw my GI yesterday who said I did not have take URSO any longer because I was not doing well on it. It made me extremely bloated. I was diagnosed 2 yrs ago. He also told me that this would not be anything to worry about for a long time maybe by the time I was 80 PBC might start giving me problems was his reply. I saw him yesterday and I will not need to go back until next year. I am having numerous issues going on with my body and sometimes wonder if it is not because of the PBC. I wish you all the best and take care.

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Hi Lisa,

Wow what an early age to get PBC! And ditto for already having a transplant! What are the side effects of your new meds? I know transplants save lives, but do you feel better or do you still feel the symptoms of PBC. How long did the docs say you can live with this transplant until the PBC starts making your new liver sick. I ask this because my GI doc asked me to think about not getting a transplant due to my current age (56). I guess living another 5 yrs or more is pretty good in his book. But the women in my family live well into their nineties, so I am still not ready yet to say no to a transplant if/when that time comes.

Kathy

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Kiddie are you cured now from Pbc or do you still have it? I heard different stories. Do you still have yur symptoms

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Apparently a transplant isn't a cure, but since transplant I've had no side effects of PBC. My liver test are all normal, which is brilliant.

Take care

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Hi kiddie ,from what I understand a new liver does not get rid of pbc ,but it would take so long to develop it wouldn't really affect you. So pleased that you're doing so well after your transplant .

Take care

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Way to go!

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Hi Lisa,

Would you share your experience with the process of getting a liver transplant. What was your MELD score (if you had to qualify that way). How long the wait and how you felt. What the odds of getting a transplant were? I think a lot of us newbies have many concerns about what we will be facing down the road, especially those of us who are non-responders to current treatment.

Thanks and take care of yourself.

Kathy

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Hi Stella,

My doctor has never talked stages with me, but I think early like 1-2 from what I have been reading. My biopsy said probable PBC, with auto-immune hepatitis, and NASH. At the time I had granulomas and sarcoidosis in my liver as well. I am 56. He did say he thought I could make it 5 years before I got seriously ill and by then he thought there would be more treatments available. At the five year mark I was able to get on Ocaliva. The doc said the only accurate way to stage was with another biopsy and he wouldn't risk that because it would not make a difference in his plan of care. No sign of bleeds and my billi is 1.6 my ALP has always remained around 300 even on Ocaliva.

Kathy

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I was diagnosed in April 2015. I was itching for 2 years prior. Gastro doctor put me on Urso but the Hepatologist told me to stop it because it causes weight gain. I also have fatty liver and eliminated all high fructose corn syrup from diet. I was controlling the itch by sunbathing but have since discovered that by eliminating processed foods loaded with preservatives and chemicals works too. I don't itch at all now, I'm not having any pain and my liver tests have returned to normal.

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Wow. Gives food for thought on how we can further manage this by using nutrition as a medicine.

Kathy

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In my case I was diagnosed at stage 2. I was immediately placed on Urso. Unfortunately some time after that I lost my insurance & had a heck of a time getting it back. I was without treatment for 18 months. My heptologist feels that this caused some fast progression from stages 2/3, into stage 4. Dr Masuoka said that he feels that progression was in the past year & a half. So Im a bit baffled by it all. It's almost as if when I went back on the Urso, it didn't work for me. I am now on Urso & Ocaliva. My ALK Phos went from 386 down to 300 in the past month.

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Sorry about the insurance bit. That would have also happened to me as I also lost my insurance for a couple of years, but the Ursol had already been tried and my numbers doubled. By the time I could get Ocaliva I was 400 and after three months I am around 300. I was hoping for lower numbers but I am just glad I am not rejecting this drug so far. I don't know what stage I am at as my doc thinks it is too much of a risk to do another biopsy.

Hang in there and thanks for the feed back.

Kathy

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You honestly don't need a biopsy to figure out what stage you're at. A simple CT scan can show the texture & if there are any nodules of the liver. I haven't had a biopsy for a few years. When I was first diagnosed in 2012 was my last biopsy. I went into the ER because of pain due to ovarian cysts. They found my liver enzymes over 2000, I was immediately admitted into the hospital & was there for over a week.

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Kathy, I spent 10 years untreated after the discovery of the antibody and enzyme markers in my blood, but didn't worsen noticeably during that time. Of course, microscopic changes must've taken place, but not enough to scar the liver visibly on ultrasound, or change my bilirubin level.

Evidence points to the crucial factor being the PBC profile that we have, although of course I wish someone had diagnosed and prescribed for me earlier. I hope you reach your projected 90+ years!

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I wonder if I ignore my disease and do what ever I want and not fight so hard to take care of myself if I can just get out there and get a liver transplant. So many of us are breaking bank measure out fruits, vegetables struggling with needing to over do it on a box of chocolate. Making sure we pay our medical insurance. Going to dr visit after Dr visit. This medication doesn't work or suffer through side affects puking till my stomach hurts. It doesn't seem fair. I'm not near needing a liver yet but I know people that are suffering in pain and can't get out of bed and did everything from the beginning of their diagnosis to take care of themselves. There's no fairness or I'm just plain wrong about the way that I feel

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I have your say I have pondered that thought myself. Seems like the lucky folks with new livers are doing better than we are.

Pam

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Hi Jenny had enough

I think you just have to do what's best for you. I am unable to take urso, but lucky that I have not had many problems so far. I would feel a lot better if I was doing all I could to slow it down. As it is I can only hope for the best.Who knows some time in the future they might find a cure , so slowing it as much as you can, and getting out and enjoying what you're able to do seems the best option to me.

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Hi Q8 Cooper. I've been diagnosed for 2 and 1/2 years, thought to have had it for about 8 years now and stage 1. I am unable to take urso after a severe allergic reaction. Speed of progression varies a lot, Luckily mine has not progressed much so far. Not sure what will happen if it does though.

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Did you try the other medication

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Hi Emerich,

I had the severe allergic reaction to, thus untreated for five years. I was able to get Ocaliva starting six months ago and am hoping I don't reject it as well. Can you get Ocaliva where you live. I live in the USA

Kathy

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I'm not sure. It was approved in March I think and meant to be available 90 days later in uk, but I'm not aware if anyone has been given it yet. It seems like you might be ok with it after all that time. Hope so and that it helps.

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Not yet. Saw my specialist yesterday and bloods are quite good. He's referred me back to my gp for now. If there's a significant change he'll see me again. I would be quite nervous about trying it really after my reaction to urso, as I think it might be similar, but don't really know much about it. Suppose that's something I might have to try if things worsen. Sorry you're having such a bad time.

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Hi Emerich,

After having the severe allergic response to Urso, both my doctor and I were also concerned that I might react to Ocaliva. Please don't be. What we found out is that the two drugs act on your body in very different ways. I had a little reaction to a terrible itching phase (I never itched before), but was told that was normal and it would work itself out and it did. I have no itching now. Even though you may feel pretty well now, you shouldn't go long without treatment of some sort. Please keep trying.

Good luck!

Kathy

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Thanks Kathy, I'll have a chat with my gp. Maybe it's something I can think about trying if there's a change in my bloods, assuming it's available. You're the first other person I've read of who is allergic to urso as well, so it's encouraging to hear you're getting on with it so far.

Good luck to you too!

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Yes, PBC is a rare disease. Perhaps 40% can become non-responders (anyone can correct that number as I am not entirely sure) but to have a health/life threatening allergic response is even more rare. My doctor just scratched his head and said he had never seen anything like it. So he called one of his mentors and that doctor confirmed that he had seen a couple of cases. We tried very carefully and although my LFTs didn't go sky rocket crazy the second (1 year later) I was what you call a non responder. My doctor was very cautious because of what happened earlier and pulled me from it. The Ocaliva showed improvement from 400 Alp to 223 but it went back up to 300 which is my norm. I am still hopeful I can get to the goal of 1.6 of the upper acceptable level range. I have overlapping AIH so I will ask if there is something other than steroids to be used in conjunction with the Ocaliva that might bring my ALP into range.

I am glad you are going to talk to your doctor about Ocaliva. My doc said no doctor in his right mind would let this treatable disease go untreated. People who are allergic to Urso might just have to wait a little longer for the right treatment. Keep advocating for yourself. You will not only help yourself but others like you to follow.

Good luck!

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