Liver specialist says I have PBC or Autoimmune Hepatitis. I am now on 1,000 mg of Ursodiol. My liver enzymes are very high but my liver had not been hurting for a while. Now that I am taking Urso I am feeling things in my liver. Is this normal? My hope is that the urso is working and my liver is adjusting. Thoughts?
Does taking Urso cause some liver pain? - PBC Foundation
I'm guessing your doctor is still running some diagnostics to get a clear diagnosis, to determine which disease you have or both? I'm not positive, but I do know with elevated liver enzymes, PLUS an elevated AMA blood test, this diagnoses PBC and I *think would distinguish between the two diseases. I'm not sure what test(s) make a firm diagnosis of Autoimmune Hepatitis, as I only have PBC. If you haven't been prescribed other medications, then I would guess you're only be treated for PBC.
I started URSO a few weeks ago for PBC. I did have mild pain in my liver area, but I think I started having it a bit before starting the URSO, so in my case I don't think it's the medication. My memory isn't the greatest though, so I can't say for sure. However, in the past week I haven't been having the upper right side pain, so perhaps it was the medication and is now improving after being on it for a few weeks. I did have a Fibroscan done to determine if any damage (cirrhosis) to my liver had taken place. Unfortunately I was a stage 4, confirming cirrhosis.
I'm guessing the doctor will be monitoring your blood to determine if your liver values are dropping, thus confirming the URSO is working. For now, I'm having my blood values done monthly.
I hope you get some relief soon.
Thank you for all that info. I am trying to learn all I can. Yes I have the positive AMA thing. That is my hope, that I feel this because the Urso is working and it will get better. Can you tell me about the Fibroscan? Is that an alternative to the Liver biopsy?
I wish you all the best and health!
My doctor indicated that a positive AMA with elevated liver values is "a slam dunk" for PBC diagnosis. About 5% of people don't have a positive AMA and still have PBC, making diagnosis a bit more challenging, but with it, you have your diagnosis.
Yes, a Fibroscan is a newer (2003) technology that is not used for diagnosis, but does determine the "stage" of PBC once you're diagnosed. A liver biopsy also does the same thing, however the Fibroscan is completely non-evasive, unlike a liver biopsy. The Fibroscan is very similar to an ultrasound. It takes a few minutes to do the test and it's completely painless...just a wand they rub over your liver area. From the Fibroscan it determines a number that determines a stage (1 through 4). The numbers represent if any stiffness is present in the liver and how much. Stiffness equals cirrhosis in the liver. My understanding is that the Fibroscan technology is not available in all parts of the world. When it is available, it is used in place of biopsies for the obvious reasons. I live in Canada and we do have it and from posts from others it looks to be available in the UK as well. I have a feeling (but I'm not positive) that it's not available in the US (perhaps others can provide that information). Not sure where you're located.
There are several PBC foundations/societies/groups that have invaluable information that you may want to visit and learn more. I found them very helpful.
(highly recommend watching this "PBC and Me" video...very helpful and simplified information for those newly diagnosed and wanting to learn more)
We have fibroscans in the US too but maybe only in the major cities. My hepatologist has one in his office. Not everyone is offered a fibroscan though. That is up to the discretion of the doctor.
My hepatologist never offered me one and I didn’t know about it until I read about it here. So at one appointment I asked, are fibroscan machines hard to come by? Is that why you never ordered a fibroscan for me?
He said, we do the scans all the time here. You don’t really need one though. But since you asked, we’ll do one today to put your mind at ease. He was extremely accommodating and told me, I’ll even go over the results with you after the technician finishes it. That was a few years ago.
I did another another one this year right before lockdown. I asked, do you think we should do another just to check? He said, sure the machine is right in this room. I am sure you are fine.
So I had to ask for it. It just gives me peace of mind. I think I want to get one every few years.
Lab work can diagnose pbc, but can’t distinguish between pbc and other liver issues. The fibroscan only measures how elastic the liver is, will only tell you if it is normal or not, but won’t help with diagnosis.
If your labs are not definitive, a biopsy is warranted to investigate.
Hope this helps.
Urso only treats pbc. If you have autoimmune hepatitis, I think the treatment is steroids.
The only way to tell if the urso is helping is via lab work. Symptoms experienced in pbc are not indicative of the condition’s progression or improvement. So the hepatologist will focus on the alk phos, ideally you want that to go to <200. They also look at a normal direct bilirubin result (not sure what the # is for benchmarking.)
Speaking from my own experiance, i am always aware of my liver, either it be a dull pain,discomfort,stabbing pain or just a weird feeling. I was diagnosed with bloods but still had a biopsy as it gives a better indication as on what stage its at. If they suspect that you have PBC/AIH overlap then you will probably be put on steroids to reduce the inflammation and an immunesuppresant. Once the inflammation is a good bit lowered then they will stop steroids but keep you on the immunesupressant .
I was diagnosed in 2013 and not sure if a biopsy is still preferred.
In the uk they don’t use liver biopsy for diagnosis and we also don’t have stages. When I was diagnosed it was the high AMA that told them I had PBC and later I had a fibroscan and was told my liver was a little stiff.
I am trying to decide if I will get the Liver biopsy. My doctor was not happy when I said I wanted to try the meds first and then decide about the biopsy. If the treatment is the same , even after the biopsy, why have it? I am just not sure. Thank you for the info!
Isn’t that ironic-my doc wanted to start me on steroids for AIH, assuming it would help confirm whether it was AIH or PCB. I don’t do well on steroids so I opted for the liver biopsy for a definitive diagnosis before starting any meds.
The biopsy confirmed PBC, however I’m one of the few who have it with negative AMA. Since I have other auto-immune issues, I can see why he assumed it was AI. There may be a little overlap, but no steroids were recommended based on the biopsy.
I’d like to add that I started “intermittent fasting” 2 weeks ago, based on some of the testimonials on this site, and I’m amazed at the improvement in my itching/stomach troubles.
Best wishes to you!
I was diagnosed and put on URSO over ten years ago. I experienced liver pain - generally stabbing pain before diagnosis and still occasionally now - generally when I have been overdoing things. Don’t think it is related to PBC but lining of liver just making a protest! Hope you find the cause.
Hi! I also have PBC with possible AIH overlap, diagnosed a year ago. Yes, abdominal pains can be associated with taking Urso. It’s taken me a year to finally work up to the 3 pills a day dose (900 mg) and the abdominal pains have slowly gone away (only occasionally now). I had to fool around with my dosing times and taking one pill 3x a day with meals seems to be working well for me. This site has helped me a lot. Good luck to you!
I have 3 Urso daily which i take before bed. I only noticed improvement in the discomfort once i started the Urso, a pain that returns if for any reason i miss taking my tablets.
I am a little confused as to why your dr thinks PBC or AIH.
Liver pain (technically the membrane around the liver, not the liver itself) can be common with PBC, for all I have never heard of that being caused by Urso. That said, it doesn’t mean that is not the case: just that I have not heard of it.
If we can be if further assistance, please contact the PBC Foundation directly.
Robert, thank you! I think it is PBC from all my research. My doctor thinks the liver biopsy will tell for sure if it is PBC. I don’t want a liver biopsy so she gave me the meds for PBC, Urso. In a month of my labs look better than I am under the impression that it is PBC. Thoughts?