I'm fairly new to this group and I've posted a couple of times but have never received any replies so not sure if anyone can see my posts? I posted the following yesterday (since deleted the post as reposting now):
I started on Urso 2 months ago for suspected PBC. While liver biopsy didn't show features of PBC or AIH, I am strongly AMA positive (highly suggestive of PBC), and have mild periportal and interface lymphohistiocytic inflammation with eosinophils. Have also had elevated liver enzymes over an extended period. My specialist thinks that even though PBC wasn't evident from the biopsy, my bloodwork is consistent with the condition and I may develop it later.
My worry is that after two months, my GGT, AST, and ALT are all within (or very close) to normal range. I should point out that these were gradually falling before starting treatment but I put this down to no longer drinking since 1 January this year and my liver was repairing itself (I was previously a regular/moderately heavy drinker before that). However, my ALP has gone up slightly from 145 to 153 which is the second highest my ALP has been. I know this is quite low compared to what it could be but I'm wondering if this means the Urso isn't working for me given this is the one most closely linked to PBC? My next appointment with the specialist isn't until mid December but I'm really anxious about this and can't wait until then. My GP doesn't have enough knowledge about the condition to be able to advise. Any advice/reassurance anyone in this group can offer?
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Supersunshine2024
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Maybe someone else with more knowledge about how long it can take for urso to kick in will chime in, but I believe I've read that it can take several months or even up to a year before you can tell whether it will be effective for you.
What I can tell you (that may reassure you) is that it sounds like you've caught it in the very early stages and it usually develops very slowly. This was my situation as well. I had a biopsy in 2011, was diagnosed in 2012 at stage 0, and 12 years later I am still at a very early stage, with completely normal labs and normal annual fibroscan results, as well as very minimal symptoms. My hepatologist calls it "bio-chemical remission," meaning I have the PBC diagnosis but it's remaining in check/stable. Like you, I had a strongly positive AMA and slightly high labs but the biopsy results appeared negative for PBC. In the end, I sought a second opinion (a year after the biopsy). I brought the digital images of my biopsy to the new doctor and he did find one tiny speck that was hallmark PBC. The first pathologist in 2011 had missed it. A second pathologist then confirmed the PBC. I was a wreck worrying about all the what-ifs for an entire year between the first doctor and the second opinion doctor. While I didn't want a PBC diagnosis, it was almost a relief knowing it was confirmed--then I could go forward with a plan. I would say that you're in a really great spot. Waiting for answers is the hardest part. Deep breaths! Just eat as healthy as possible and take care of yourself the best you can. I rarely worry about having PBC anymore. I take my urso daily, run labs periodically, see my specialist once a year, and eat well and exercise as much as possible. Good luck!!
I echo the thoughts of periwinkle88 and would add a couple of points. Check your weight to dosage ratio of URSO your patient information leaflet will probably show 13-15 mg per kilogram of weight. Most specialists suggest losing weight if overweight to reduce stress on liver you can probably check the recommended BMI for Australia with a local app. I have not seen any previous post from you but as an international forum encompassing many time zones questions take a while to be seen. There was a notification from HU yesterday saying they were experiencing some technical issues.
I think most doctors would give it a bit longer to determine if URSO is working, many say up to a year. What is important, is the test results over time not one single increase/decreae because many things can cause fluctuations in test results. I know it seems December is a long time away but in terms of PBC it’s not that far away, PBC is very slow to progress.
If you’re feeling well otherwise, I would maybe ask your GP to repeat the tests for you. it may help you relax a bit, what you don’t need is added stress.
I will say from my own bloods over the years having had fluctuations all the time. I know my consultant wouldn't worry about that amount of increase in one of my tests. She would likely put that down to error in the lab or by the person taking the sample. However what she would do, is repeat the test and 15 years on, I’am still in the normal range for fibroscan, even with those pesky fluctuations. Try not to worry.
I agree with the above comments. It can take up to a year on urso before you see a significant drop in Alk Phos. Mine was initially around 200 when I was diagnosed in 2020 but dropped to normal after a year. It now hovers around 106 but can go higher if I have a virus or have pushed my self too hard with exercise. A few months ago it went up to 153 and I was really worried but two months later it had dropped to 116. So I agree there will be variations for various reasons but it’s the overall trend that matters. I too have a normal fibroscan and now try to just get on with life and keep in touch with my lovely friends at the PBC foundation. Fingers crossed you will see those results stabilise even more as the urso does its work.
First off, you will likely be better off if you can get in with a liver specialist. They will be better able to treat this disease and the nuances around it.
The AMA test is 95% accurate at stating that you have PBC. The disease can exist for years prior to liver damage and increased liver enzymes.
In the states, where I am tested, the high normal range for ALP is 120. My specialist was not terribly concerned when I was at 180. My last test was 150 and I have since been put on fenofibrate and expect my results to be normal at next test.
Most literature, and therefore Dr recommendations around secondary treatment for this to “ non- is to wait one year. In the US two new drugs have been recently approved, and they appear to have changed the criteria to six months above normal to reach non-responder or incomplete responder status.
additionally, ALP is often the only liver enzyme impacted in early disease when there is relatively little liver damage.
I do know urso can take several months for it to change anything. I was diagnosed years ago and my enzymes were through the roof. Like in the 700’s😬. I was super sick. The smell of food was making me sick I lost a lot of weight and I am not big to begin with.
I was sick for over a year before they diagnosed me and I started on urso
My AMA was positive. I had symptoms of sickness. Nauseous and certain pets of my arms were so itchy I didn’t know what to do
I was given cholystramine ( not sure if it’s spelled correctly) for itching and it helped after a little bit
My enzymes still fluctuate I started on two pills a day Went eventually to one and half Then back to one Now I’m back again to 1 1/2 pills
I sometimes get a little itchy but haven’t taken cholystramine in years now
I see my gastro once a year unless I have issues amd am now getting blood work every 6 months
I am anemic amd have been for years
I had a few iron infusions and it seemed to help but having such heavy periods when I would get one then my period would last 3 weeks out of a month so I guess the infusion didn’t work after that I later had an ablation which slowed the progress amd has now stopped my periods all together which I’m so greatful for
But my iron is still low I used to be at a 2 now I’m around 9 so I’m still flagged for it
The thing is go day to day Try not to stress because urso does take a while for it to be effective.
You mentioned that your dose of Urso changes.... I hope this is because of your weight changing. Dosage of Urso is never based on lab results or symptoms. It is prescribed at 13-15mgs/kg of body weight. Please make sure you are on the right dose. This is so important.
Everyone was 'spot on' with their thoughts and advice to you. I don't think your original post did show up here. Glad we saw it now though. Urso can take up to a year to show a decrease in your lab values, especially the alk phos numbers. PBC is a very slow, but progressive disease that means lab can change very very slowly - we all have fluctuations. That is normal for all of us. What is important is that you have those liver enzymes repeated every 3-6 months, especially since your AMA was +. You need to look at the overall trend of those results. What is the overall results is what to look at. I will post more to you a bit later.
I was diagnosed with PBC, in 2016. I was put on Urso. My Alk Phas , was never within normal limits. It was always high. It took months for the Urso, to bring it down. However, never within normal limits.
Then, two years ago, my rheumatoid arthritis got worse. And I was put on a low-dose of Azathioprine.. Not only did it help with my pain from the rheumatoid arthritis, but for the first time, it brought down my Alk Phas, two within normal limits.
Sorry, I had to go somewhere earlier. According to the Standard of Care for diagnosing and treating PBC, if you have a + AMA and elevated liver enzymes that is sufficient (in most cases) for a diagnosis of PBC. This is another reason for you to continue to have labs drawn to see the trend of your liver enzymes. A biopsy is really not used for diagnosis unless they suspect another disease process going on like fatty liver or autoimmune hepatitis (AIH). A biopsy sample only takes 1/50,000 of your liver surface. It only tells you what, if anything, is happening at that exact point. Even if you have PBC the biopsy may not have been taken a 'that spot'. I agree you need to see someone who is knowledgeable in PBC. This is a life long relationship with your doctor and it needs to be someone who know about liver diseases, hopefully PBC. Primary and many GI doctors do not. I know you want answers now, but with PBC they don't always come quickly. While you waiting for a diagnosis for now I believe you should continue with the Urso. Urso can often take up to a year to determine if someone is a 'responder' or not. If your liver enzymes are already in the range you spoke of, then I wouldn't expect to see a significant rise with the Urso. We all have fluctuations up and down. Take a breath. The Urso doesn't do any harm even if your enzymes never rise much more. It keeps your bile ducts open, without inflammation, so they allow the bile to get to your liver. I would strongly suggest you join The PBC Foundation. The amount of information they have is amazing. It's free. pbcfoundation.org.uk Please continue to let us know how you are. Ask anything here anytime. Take that breath....
Donna, I was diagnosed with PBC in October last year. Had a biopsy at the end of October and the report states stage 0/1. I just had my first fibroscan on September 20. My doctor states the scan showed stage F2. I’ve been really upset by the progression in such a short time. My labs have been really good at my last visit with ALT and AST in normal range and ALP at 125. From your comment above, it sounds like the biopsy may have suggested the wrong staging in the first place.
Very inaccurate to stage with a biopsy in early stages as a biopsy only takes 1/50,000 of the liver surface. How do you know if this speaks for the entire liver. Find comfort in your numbers. They tell you how the bile ducts are functioning - the amount of inflammation present. Repeat labs every 3-6 months and look at the overall trends. It's ok....
If you have PBC, you should expect ALP to fluctuate all the time, sometimes quite a bit. It can be almost normal one time, and next time you test (say in 4 - 6 month) it is up 40-50 points. For as long as it stays below 200, it is a satisfactory result.
I was diagnosed in 2018 on routine liver tests without symptoms except fatigue. It took about a year for numbers to stabilize. I once asked my GP about a medication that had a warning for those with liver disease not to take it. She said, "You don't have liver disease." I asked why I was taking the medication, and her reply was, "So that you don't get it." My understanding is that urso is a synthetic bile that keeps things working in the bile ducts. I once thought I would cut down to 2 instead of 3 per day. In about a month, I had what seemed like a bit of a gall bladder attack. My GP said that I then knew why I was taking the meds.
Here is something on over the counter drugs and alcohol. Recently, my GGT and ALP were slightly elevated after taking Tylenol for arthritis for a few months. (My ALP was also briefly elevated after COVID vaccines.) This seems to contradict my GP.
Patients with liver disease should restrict the daily amount of acetaminophen to 2,000 mg per day, or even less if severe liver disease is present.
It is important that you read the labels of all prescription and over-the-counter medications that you take. Often acetaminophen may be present and you could accidentally exceed the safe limit dose of acetaminophen.
People who drink alcoholic beverages regularly are at higher risk of developing severe liver damage from acetaminophen. Drinking alcohol regularly changes the way the liver breaks down certain medications. In the case of acetaminophen, alcohol use leads to accumulation of a toxic byproduct of acetaminophen in the liver that can kill the liver cells. People who drink alcohol regularly should not take acetaminophen.
I would definitely reach out to a specialist or ask your doctor to point you in the direction of someone who knows more about the disease. It seems like they have caught it early which is wonderful news! Keep getting labs and all bloodwork as they tell you to and ask if he can send you to a gastroenterologist or even a hepatologist for future references. Mine was caught pretty late and am now in Cirrhosis cause by PBC. Never stop advocating for your self and always ask questions. Thank you for sharing! Prayers for patience and perseverance! You are not alone!
current guidelines are to keep alk phos under 200 for pbc patients. If it trends > 200 then the specialist will likely add a secondary medication in addition to urso to bring it down.
Dont think anything needs to change for you. My alk phos is trending upwards to 160s but when I was first on urso, it brought it to normal…then in recent years trending higher.
Best to keep a list of your questions when you see the specialist in Dec
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Biopsy results back... 
Could high AMA be something else? 
Urso time limit?
Is it normal for ALP levels to fluctuate? 
