Hi All,
I have a question and wondered if anyone had an answer to if they had a similar experience.
I just started taking Urso and have been on it now close to a month my recent blood work shows that my Alk Phos has increased rather than decreased. While I know it may take awhile for Urso to potentially decrease ones Alk Phos levels, why would my Alk Phos all of the suddent be higher than its been (compared to my bloodwork over the past year)??
my doctor told me it can take a year to see results and that it could fluctuate.
I know all too well how disheartening it is to have your numbers increase. The best advice I can give you is be patient. Lab work, according to the Standard of Care, should be drawn every 3-6 months. What are your numbers? It's really important, after some time being on the Urso has passed, to always look at the overall trend of your numbers. The results of any alk phos is the amount of alk phos in your blood at exactly that moment when the blood was drawn - that's why you really need to look at the trend over time. It can often take up to a year to see if you are a responder to Urso or not. You mentioned you've had labs drawn - but only on Urso for a month. Be sure you are on the right dose - this is so crucial for the best results. It is ALWAYS based only on your body weight - never symptoms or lab results. Dosage is 13-15mgs/kg. I hope some of this helps. I know how scary this disease can be.
Hi Donna,
I started urso the end of march 2024 and at that time my alk phos level was 256. End of April 2024 my alk phos was 372, End of May 2024 it was 258, and end of July it was 285. So, I worry about the Urso being effective since I have been taking 1250 mg of Urso daily and my alk phos continues to remain elevated and going in the opposite direction. My vitamin D level for some reason has also low and I am considered deficient (17) which I have never had issues with. Go to see the GI doc next week and I am not looking forward to my appointment. Although last time I seen the GI doctor, he said he was more concerned about my bilirubin levels remaining normal which for now have never been an issue.
I can understand being afraid that the Urso is not working. Just TRY to be patient. It can take up to the year to see real results. You've been taking it 4 1/2 months. One important question is "are you on the right dose"? Please check that. Take your weight, divide by 2.2, multiply that number by 13,14, or 15. The dosage formula is 13-15mgs of Urso/kg of body weight. You have to be on the right dose to even be effective. Is everyone a responder to Urso? I think you know everyone isn't. Give it time. Just be sure you look at the overall trend.....not each number individually. First though, check the dose. But.... if your numbers continue to rise for the next several months your doctor should be concerned. The alk phos is an enzyme that is released by the bile duct cells . It is a marker of stress or injury that can lead to bile flow and/or production. I hope your doctor does realize that the alk phos numbers are very important. He should be concerned about all of your liver enzymes. Let me know how it goes --- and especially if you are on the right dose or not.
Donna,
Thank you for your quick response 
I took my weight (197 lbs) and divided it by 2.2 lbs and multiplied that number by 13, 14, and 15. The dose I am currently on is 1250 milligrams daily so I am not sure if my daily dosage is adequate or not but it appears that its closer to multiplying my results by 14. I am not sure if I will stay with the GI doctor I have or not as although he seems nice, I get frustrated trying to communicate with him as I feel he doesnt listen long enough for me to ask him anything and tends to shut me down (me doctor, you patient type). My diagnosis was pretty much determined to be PBC based on my liver enzymes and a positive AMA and ANA but initially I was sent to a rheumatologist as my initial bloodwork suggested that I had systemic lupus. However a rheumatologist I seen didnt feel I had lupus and ordered the AMA which came back positive and referred me to the GI doctor. While I know the majority of people who test AMA positive have PBC, I did find in the research that a positive AMA can also be seen in patients with rheumatoid arthritis, graft vs. host disease, autoimmune hepatitis and lupus. I do know from my last visit with him he said I would need to take the urso for at least a year to see if makes a difference (initially he told me I should see a change in a few months) He happened to message me the other day and said in his message that "we will discuss next steps"?? when he sees me next week??? So, not sure what that means and that is what is stressing me out As Im thinking he will tell me I need to get a liver biopsy and Frankly, I am not ready for that right now especially after he told me I would need to take the urso for at least 1 year. Sorry my message is soooooo long
Always glad to get a 'long' reply.. lots of talk about. It's better to be taking too much Urso than not enough. If one more tablet or capsule would give you the 15mgs range I would for sure tell him you need to be on a higher dose. Looks like your 90kgs multiplied by 15 would be 1350. You might need to be on the higher amount. You just want to make the Urso dose is the most you can take according to your weight. I'm glad you are thinking about changing doctors. Can you see a hepatologist? There is no need for a biopsy if you have a + AMA and elevated enzymes. If the rheumatologist suspects other autoimmune diseases, then he should order blood work accordingly. You need to ask the doc this week regarding the biopsy " what further information would it give him? and how would it change the treatment"? You would still be on the Urso. I take it you live in the UK. I would suggest you read the Standard of Care for PBC in the UK. They are called the EASL Guidelines. You can google them. I would also strongly encourage you to get Dr. Jones's book on PBC. He is the world's leading expert on it. The Definitive Guide for Patients with Primary Biliary Cholangitis. It's available on Amazon. It is so easy to understand and so helpful for you to know how you should be cared for. The more you know the more you can feel confident you are getting the right care.. and know when to question it. We can chat more anytime.
Donna,
Thank you so much for getting back to me. I see the GI doctor tomorrow. Will have to see what he has to say and I will ask him about possibly increasing my dose of Urso and if he recommends a liver biopsy, I will ask him the questions you suggested I pose to him. I was wondering if he might suspect PBC with Autoimmune Hepatitis overlap if he ends up suggesting a liver biopsy but I am not sure. I plan on staying on the Urso longer before undergoing an invasive procedure for now. Thank you for recommending the book on Amazon. I will have to get a copy and download it to my Kindle. I live in the US. I will keep you posted to let you know if he suggests I have a biopsy at this time and if so, what his thinking is as to why he might feel I need to get one. Thanks again
If he truly suspects AIH overlap then a biopsy is warranted. If he doesn't, then do ask why he thinks you need one. We do have to advocate for ourselves and not be afraid to question what our doctor says. The days of everything coming out of their mouths is 'gospel' are over. Glad you are being patient with regards to staying on the Urso to see if it helps your numbers. I would strongly advocate for the maximum dose of Urso though. I live about 50 miles west of St.Louis. Are you close?
How is Primary Biliary Cholangitis (PBC) diagnosed?
Because many people with Primary Biliary Cholangitis (PBC) have no symptoms, the disease is often discovered incidentally due to abnormal results on routine liver blood tests. Once Primary Biliary Cholangitis (PBC) is suspected, a blood test to check for antimitochondrial antibody (AMA) is done. This test is positive in nearly all people with Primary Biliary Cholangitis (PBC). A liver biopsy, where a small sample of liver tissue is removed with a small needle can help confirm the diagnosis. Imaging studies may be used to rule out other diseases, or to further evaluate patients once they have been diagnosed with Primary Biliary Cholangitis (PBC).
Ninja girl: Thank you for your reply. When I first seen the GI doctor he ordered an ultrasound which turned out normal (no enlargement of liver, spleen, no stones, blockages, and blood flow to liver and bile ducts was normal. He has mentioned a liver biopsy and I was hoping that I would not have to go the invasive route as I have other medical issues going trying to get my platelets within normal range and recently had to increase my meds due to having blood cancer (thrombocythemia). Another fear I have is to put myself through an invasive procedure that ends up being inconclusive. My understanding about liver biopsies and researching the topic is that this can be tricky and many times they need to take various samples from different sites of your liver as if they only sample one area, they may miss the affected area? (something like that). I also wonder if my blood cancer and my blood cancer medications have something to do with my elevated liver enzymes? IDK, I think I will wait on the LB and hope the Urso kicks in closer to the year mark.
Yes biopsies are invasive. Your concerns are very valid. Maybe you can speak to a doctor you trust about all this and get some expert guidance. You don't have to do this by yourself. I mean the relationship you have with your doctor is key to determine next steps. This is not the doctor telling you what to do, but rather he/she explaining options and pros and cons and you choose together the best way forward.
ninjagirl,
I will have to see what the GI doctor says next week when I see him and see how things go. Maybe I should be thinking about looking for a hepatologist who specializes in PBC and has more expertise in this area (as when I asked the GI doctor if he has had other patients with PBC he gave me a smile and the impression that I am one of his first PBC patients.
Is the GI a hepatologist? If you have access to a hepatologist, go see one for peace of mind as they are more specialized for liver issues. My primary care doctor was a GI but he knew nothing about pbc so he recommended my hepatologist to me.
If you are vitamin D deficient, your doctor should have prescribed mega doses of D to bring you back on track, then you maintain by taking over the counter D supplements. I was low when first diagnosed and my hepatologist prescribed the mega strength D which he had me take one every 2 weeks. I think he gave me 12 pills in all so 24 weeks.
Do you take additional supplements with Vitamin D? I was just wondering as I tried to discuss with him whether I should be taking vitamin K2 with vitamin D as I read somewhere that it is important to take vitamin K2 with vitamin d to make sure the vitamin d gets absorbed in your bones and not absorbed in your arteries causing arterial calcification. But he seemed to just push that off. I did have a dexa scan recently that showed mild osteopenia but at 66 years old, that doesnt shock me.
I just take fish oil, vitamin D and calcium. Doctor didnt tell me that i need anything else. I used to take a multivitamin but my b12 was too high so I figured I got enough nutrients from healthy eating.
I also do strength training for my bones and maintaining muscle mass. My hep told me just try to exercise 30 minutes a day.
Ninja girl, Thank you Do you know of a good fish oil supplement? I remember when I was younger, my mom used to give me and my brothers and sisters cod liver oil. Boy was that yummy Not!! LOL
Trident Wild Alaskan Salmon Oil 1000mg Dietary Supplement
Pure Alaska Omega is made from wild-caught salmon found in the clean waters of the North Pacific. Our unique cold-press extraction method shields the oil from damaging high-heat and eliminates the need for further refining or chemical treatments. The result is an extra virgin salmon oil that delivers all omega fatty acids, along with vitamins A, D, and E, and the antioxidant Astaxanthin—all naturally found in wild-caught Alaska salmon.
Also when I was first diagnosed, my hepatologist ordered a dexa scan to establish a baseline for bone density. PBC people are more susceptible to bone density issues. I take calcium supplements to address this. He also checked my thyroid functions as we are also susceptible to that. He also tested me for hep B immunity though I was vaccinated years ago, the immunity elapsed. So he redid that series of shots for me.
Ninja girl,
Thank you for all of your feedback as I wasnt aware that PBC makes people more susceptible to bone density and thyroid issues. I did have a dexa scan recently and it showed mild osteopenia. I havent had a thyroid function test done recently, although (maybe thats why Im gaining weight? Hypothyroid? maybe Prior to diagnosis they ran all my blood work for all of the various types of hepatitis and everything was normal. Thank you for all of your feedback as I really appreciate it. I wish we lived in the days of "Star Trek" and they had the technology they use to scan our bodies and tell us exactly what is going on. LOL
No worries. Everything I shared with you came from my hep. He told me about what we need to monitor etc. I see him quarterly and he orders whatever tests needed. I did do a biopsy to diagnose the pbc. I did a liver sonogram and a fibroscan too. Fibroscan checks for elasticity etc of the liver.
ninjagirl: how would you describe your experience of having the liver biopsy? Was it painful? Were you given any sedation? Do you remember the procedure? etc.
You are totally under anesthesia, you don’t feel anything. It was fine. I was apprehensive but we had to get to the bottom of it.
I did the biopsy at a hospital. In the surgery room was the surgeon, nurse, a resident doctor, the anesthesiologist and a technician as it was a sonogram guided biopsy.
The excruciating part was waiting for the results and diagnosis. The hospital pathologist couldn’t diagnose definitively. So the Hep sent the samples to a world renowned liver pathologist to get the diagnosis. It took a while and was driving me insane.
Ninjagirl,
I dont know which is worse, anticipating and going through the procedure or waiting for the results. All of those things can cause so much worry and anxiety. I know if and when I have to do that, I am hoping I will be heavily sedated and wont remember a thing. Thank you so much for sharing
I dreaded the biopsy…my GI kept nagging me about it and told me go to the hep, and said, I hope he can convince you. This was over a 6 month period. We only knew my LFTs were high but not why. I thought it was the statins so I told my doctor let’s stop the meds and see if it helps. I just didn’t believe anything was wrong other than the lab work. This entire experience was nerve wrecking. I finally was able to calm down because my hep has the best bedside manner and is always available for questions etc.
Ninjagirl,
If things dont go well with my next appt with the GI doctor, I might have to do some research and find a hep dr. Hopefully one like yours who has excellent bed side manner and is willing to field my questions and actually have a two-way conversation vs. a one way or the highway situation. All my doctors continue to push statins on me as my cholesterol is high and though it might not be in my best interest, I tell them I am already on enough medications for now. I know Ive read other posts of people worried about statins and liver issues so I can see where that would be a valid concern. I often wonder if my medications for my blood cancer are making things worse as well because everything we take goes through our liver. Heck it seems like a couple of years ago, I was doing fine until I found out I had high blood pressure and needed to start medication and since then, everything seems to be going down hill. Two years after starting bp meds I find out I have blood cancer and this year pbc diagnosis. Prior to that, all that was going on with me was high blood pressure and a bout with covid (delta version)
Elevated LFTs can be medication induced. Did your GI rule that out? Or what test results diagnosed the pbc…believe it is at least 2 factors and you don’t necessarily need a biopsy if it is definitive by those tests. My labs couldn’t definitively say it was pbc which was why I had to do the biopsy.
Yes if you can, find a hep in a teaching hospital because they will be on top of the latest research etc and since they teach, should be happy to answer your questions and share lots of information with you. I learn so much from my doctor.
Good luck.
BTW I went back on the statins. My hep said my cholesterol had to be addressed and that it was safe. I didn’t just take his word for it. I consulted with my pcp and the cardiologist who also spoke to the hep. It is back under control, total cholesterol is <160, ldl <100.
Yes a hypothyroid may cause weight gain. I see the thyroid doctor once a year. I dont need any meds but we monitor.
Why does Urso just quit 
9 years since they first found the M2 antibodies, 16 years since my alk phos started being elevated. My story.
