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PBC Foundation
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ALP level and stage

Hi everyone, I had a liver biopsy couple of days and stressfully awaiting the result. I had two AMA test with complete different titer within 10 days ( first 1:320 second 1:20 😳) and also same as ANA ( first 1:640 homogeneous pattern and second 1:80 speckled pattern). My LFT is : AST81 ALT103 and ALP265 ggt195.

I’m wondering is there a correlation between ALP level and PBC stage? I mean the higher ALP leading to higher stages.

Im so worriyabout my stage, please help.

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Hi sona

Don't think the level of alp can give you a stage of disease. Your biopsy will tell you that or a fibroscan. When the disease progresses it's your bilirubin level will be really high, do you know what level that is.

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Total Bil is 0.6, direct 0.3 in normal range.

I was reading all posts of members who were diagnosed in early stages and realized that their LFT were just slightly abnormal, that’s why I’m upset.

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Sona_akb...when I was diagnosed my ALP was 247 & positive AMA. After fibroscan I was said to be early stage 2 fibrosis. That is not PBC stage. My ALP quickly dropped to normal but again, fibroscan shows stage 3 fibrosis. So the only true LFT is your direct bilirubin which tells how well your liver is functioning. There is a post here from Robert that will explain a lot about this. 😊

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Thank you gwillistexas you’re so kind❤️❤️

I understand what you’re trying ti say but I mean if I were diagnosed when ALP was lower it would be better prognosis. I think 265 is quite high😞😞 and means the inflammation has lasted more, although I don’t have any symptoms yet.

I just wish to be in early stages. Sometimes I think I don’t want to know my stage or to do fibroscan because those won’t change the treatment plan because there aren’t many choices but 2 drugs. There is nothing more to do😭😭😭😭

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I can’t answer that, I’m sorry. I am symptom free too. I wasn’t trying to alarm you but it’s not a disease to be sugar coated. Even though fibroscan won’t change treatment plan, some drs want it as a baseline & will repeat once you’ve been on meds for a year. Some prefer biopsy. That gives them an idea if it’s working. Just follow your dr & see what he wants you to do. 😊 I’m about to leave for work. Have a nice day 🤗

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Thank you for your advice❤️❤️❤️ You’ve been so so kind to me in these rough days of mine 😞

Have a nice day

God bless you

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I appreciate that😊. I’m still learning too. Have only been diagnosed one year. I research many things & it helps to understand. It is hard but this is a loving & supportive place to be. You will find much comfort 😊🌷🙏🏻

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Your prognosis will also greatly factor upon on how well you respond to urso. Per my hepatologist, pbc patients have a normal life expectancy vs the average person if pbc is caught early & patient responds to urso.

Don’t worry until you have all the results & listen to what your doctor tells you. This is hard to do, but worrying won’t change what is. Do your research & ask your doctor the appropriate questions.

Haley

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Thank you dear @ninjagirlwebb for ensuring me.

I think this opinion about life expectancy in pbc is related to patients diagnosed in 45-65 years old, because someone who’s on her 30-31 (like me) is unlikely to live more than 60y/o with such a chronic disease and the only hope for young patients is being on transplant list 😭😭😭😭😭😭 how sad 😞

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There are people on this board who were diagnosed at an early age and have had the condition 10+ years. Don’t think that way until you have actual evidence to support any of your assumptions.

And even if that were true, why waste your time doing this to yourself when it won’t change what is. Live your life in the moment & do all the things you enjoy doing. Life is unpredictable with or without a chronic disease. Don’t let that stop you from living a full life.

Chances are the only way this will impact you is that you have to take meds daily & go to the doctor every 3 months.

Just be positive & have fun!

Haley

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I think I need time to overcome this situation and to be able to think like you. Thank you for your patience for hearing me 😍😍😍😍

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Believe me, it took me a while to be in the right mind set. 🤗

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Sona, excuse my being so blunt but that's complete and utter bullshit! If a doctor told you that please find another. Lots of us here were diagnosed in our forties or fifties but can point to symptoms in our early to mid-thirties. We just didn't know what was causing them and went on with our lives for years before something led to a blood test.

High levels of stress are a trigger for autoimmunity. Don't let this freak you out. Give your body lots of love. Meditate, eat well, sleep. Learn to live in the moment and appreciate what's around you.

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That’s very interesting I was just thinking same as you that maybe those are diagnosed in 40-50 have had the disease 10years earlier. Praying to be at the beginning of this marathon 🙏🏻🙏🏻

Thank you again, now I cab take a deep breath.

Also I agree about the stress impact, Because i know what caused me initiating this disease. I lost my mom last year after an unsuccessful cancer treatment. She also had lupus. Both the genetic and extreme sadness attacked me.

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Hi Sona,

It's understandable to be stressed and unsure and worried when first confronting diagnosis. Here is a document from the PBC Foundation- It gives excellent guidance regarding PBC = with questions to ask the doctor and in general can help you as you work through all the new information.

pbcfoundation.org.uk/upload...

Also - regarding life expectancy issues- Robert (from the PBC Foundation) has a great post addressing this- healthunlocked.com/pbc-foun...

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Many thanks, you’re so kind 😍😍 that’s a very good relief for me

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I agree 100%!

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Sonia...the earlier PBC is diagnosed and treated the better. Your levels, while elevated are not critical. The level of fibrosis, if you have any, will determine how far along your disease has progressed. Staying on Urso and living a healthy lifestyle is a key component to managing PBC. Most people go on to live a normal life. People become pregnant and have families. The oldest person on record with PBC was, I believe over 100 when she died. BREATHE. Live your life, manage your symptoms. Some days will be harder than others, but you’ ve got this! And we’re here for you on days you don’t feel like you do! ❤️

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Thank you, you made my day. I feel so lucky to find this support group or i will probably couldn’t cope with the disease.

God bless you❤️❤️

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You may not believe this right now because all this is such a shock to your system. You are gonna be managed, cared for and labs looked after... You are gonna be advised and watched along the way. There are things in works too. Clinical trials and research. There is hope. There is. ❤❤❤

Stella.

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265 is not that high and is not tied to your prognosis. The number indicates there is a blockage slowing the movement of bile. If you had a gallstone the number could be very high very quickly and go to normal when the stone was passed or removed. Urso removes cholesterol that's blocking the bile ducts. That can bring ALP to normal but it doesn't fix the damaged ducts. Its benefit is by keeping the bile moving you avoid damage caused by caustic bile sitting around in your liver. The other part the doctors cant answer: how do we stop the attacks on our bile ducts? Medical doctors don't have an answer to that. Holistic doctors recommend exercise, sleep at least 8 hours, drink lots of purified water, a diet rich in veggies of all colors, crucify from some vegetables, healthy fats and protein. For many cutting gluten and/or dairy helps.

Consider this a wake up call to live your best life!

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Thank you 🙏🏻 I was considering mine is high. Your comment is just a very good relief ❤️❤️❤️

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We have been where you are today. You haven't said you have any symptoms. That makes you a very lucky lady. I am, too. I truly consider this a gift. I have radically changed how I live and what I eat, and I ate well before. ID be happy to talk to you about that. Just private message me your member and where you live so we can figure out the time difference. I'm in Miami, Florida.

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So, are you saying ALP is linked to inflammation? If that were the case, then if our ALP comes to normal range, there should be no continuing inflammation to damage bile ducts further & cause fibrosis to increase. Not sure I’m understanding you correctly.

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No II don’t mean that’s actually true, I was just wondering and trying to find some way to predict my stage. Just so frightened to be at late stages

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Sorry, I was asking Michi1. We cannot predict our stage. Your dr can determine your fibrosis stage through tests. Honey we’re all frightened to some degree. But we have to find a way to accept & cope with this. You will find a comfort zone somewhere, so you’re not constantly stressed. 😊

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i could not have said it better! and yes ALP 265 is not bad at all ! I went to my skin doc around november 2001 because i started to itch like crazy ! he did some blood work and the result was very bad,including my chlolesterol level and ALP! so after that it was discovered i had 2 stones in my gall bladder! iwas sent to a gastro ,he took over ,did not want me to have surgery [i was not hurting] ran more tests AMA ANa and old me I had PBC! I read about it, was not worried about it and he put me on Urso Forte 500mg twice a day i quit itching, he did a biopsy which confirmed PBC very early stage ! that was16 years ago! I just retired from my very stressfull job! however myALP went up some about one year ago because of the insurance and with the ursodiol i started to itch again and my ALP went up [245] I just a fibroscan at Henry Ford hospital in Detroit in sept ,im stage 2 mild fibrosis.. i feel but itching sometimes at nite! i go back o my gastro in dec for my 6 months check up im just watching my biliburin and albumin! and oh yes i still have my gall stones no problems with them! im trying to get back on the regular Urso ! Ursodiol is generic! not good

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Thank you ❤️ That’s very good your disease is quite slow.

I don’t know if urso forte is available in my country 😭😭 many drugs are restricted here...

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My alp at dx was 680 and my ggt was 1300 so really high. I'm sure when you are put on meds it will come down. Don't go stressing to much. My lfts now are totally normal as I am on a clinical trial with positive results.

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Good news😘 happy for you. If you don’t mind can I ask some questions?

What’s your stage?

you didn’t respond to urso?

You mean another drug on clinical trial? What’s the name and is it available for others too?

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seladelpar Is the name of the trial drug I'm on the extended part of phase 2 but they are recruiting for phase 3. I am classed as a nonresponder and I'm at stage 3.

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Thank you dear kimphoebe ❤️❤️❤️

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Hi Sona,

I feel for you getting diagnosed with PBC. Believe me it does take time to accept your diagnosis and come to terms with it. You will feel scared and fearful. Contact the PBC Foundation where you will find a fact sheet which will give you more information also some reassurance. This forum is great for support and answering questions. It took me quite a few months to get my head around it. Try and look for some positives. Your numbers are not extremely high so I would suggest you’ve been caught early...which is a positive. You are symptom free which also suggests it’s been caught early. Fingers crossed you respond well to the URSO, but they are doing research into other drugs, so there is hope. Not everyone ends up on the transplant list.

I hope this helps, but please just give yourself time to come to terms with the diagnosis...it is a shock but you will feel better about it as time goes on. Be kind to yourself and try and look for the positives.

Best wishes xxx

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i dont think the ALP is indicative of stage of disease. it is used as one of the markers, but my ALP went up to 186 early on, and it has gone right down since taking urso.

I read somewhere about a ratio of AST/ALT, but now i cant find it. I would think the fibroscan is going to be a much better indicator of stage of disease or more correctly how much the liver is damaged.

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Thank you 🙏🏻 I feel much better now

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