I was diagnosed last August with PBC and prescribed Urso. Although I never started taking the drug, I have since moved and therefore decided to follow up on this disease with new GI. He stated that if I truly have PBC, Urso will not help. So confused.
See this article by the The International LIver Congress 2016:
Due to the fact that I was told over the phone by the GI and told to look it up on the internet. I did not feel confident enough to start a medication without further information as well as the expense was too great. At this point I really don't even know where my liver is at and if it is necessary. According to this GI, it is not necessary as well told me, I won't be dying tomorrow and anytime soon. lol
Nice huh? This is the reason I get frustrated with Drs., is it serious or not?
By taking urso my ALP has reduced by approx 800 points and my GGT by 950. It may be that your figures for alp and ggt are not high enough to warrant taking the urso. I think it would be a good idea to contact the PBC foundation to get their advice.
This disease is progressive and the medicine will slow the progression. So while it is a slow progressive disease in the worst case is needing a Liver transplant being your only option in the future... The lists are long and the wait is sometimes to late. So keep that in mind when they say that because while there are some things like long history of the illness it usually is slow. There are things that might create a situation that might move it quicker. Doing things that would hurt anyones liver we are just more sensitive to what it would do. Why doctors suggest we maintain a healthy lifestyle and diet.
This is what I was told about Urso and PBC the medicine will not cure the disease at all but it will slow down the progressiveness of the disease. So bare that in mind and when a doctor says it won't help it may be true in some cases. I have never been able to take many medicines because I would have reactions or severe abdominal pains. I was extremely grateful to be able to take the Urso. I am happy there was hope and help for now.
I read the article you posted the link for, it talks about Primary Biliary Cholangiitis which is a different disease from Primary Biliary Cirrhosis. I know somebody with PB Cholangiitis and I have PBCirrhosis she takes Prednisone, I take Urso. Since I started Urso my results have improved just as people above have mentioned.
Hi, the C got changed from Cirrhosis to Cholanglitis they are both the same disease. It has different effects on different people but still the same disease.
Hi Judyt, I believe there was a name change from Cirrhosis to Cholangitis recently. What a doctor prescribes is not what might be a different disease but situation. PBC is a disease of the bile ducts (found in the liver) and they break down bile acid when not working properly it can cause overtime cirrhosis, not all who have this have cirrhosis that is what happenes later after it progresses further. Dee
I think that Cholangiitis is just the new name for the 'Cirrhosis' part of PBC because people thought they had Cirrhosis of the liver, which it is not. They are the same thing. Just that only some people are helped by Urso and and some not.
I noticed that as well, but what do you do when the GI says not gonna prescribe and it won't help anyway?
Hello kauthement.
I was going to respond to your posting yesterday evening but for some reason this site keeps showing in a different format at certain times and then I am unable to do anything.
My first thought on reading your posting was as noticed on the first comment from Sammie7. You have replied to that one but I still cannot help wondering why you didn't perhaps ask a pharmacist where you'd take out a prescription or perhaps ask to see the patient information leaflet.
I stumbled across PBC mid-2010 when I had been itching for a few months and the GP was getting nowhere with bloods for this and that (except the 'standard' rising liver function test that seems to be the norm in PBC). Read about it in a library reference book first. I then snooped on internet and came across the PBC Foundation as well as Liver North and British Liver Trust (being in the UK I tend to stick with British sites). i read that the only treatment available for PBC would be ursodeoxycholic acid (originally called UDCA but normally urso these days) which was used in the attempt to slow progress of the PBC. Read that PBC was variable between individuals as to how it might progress, some it would never alter, others it would slowly progress, etc.
I knew when I got a call from the GP surgery early December 2010 and asked what medication had I go in for that I was to be informed I had PBC. (The consultant I saw about 6wks prior wrote to my GP after seeing me and taking antibody tests.) I was reluctant to take as pre-2010 I had never really seen my GP for anything and my last prescription was back in 1999 and for 7 days only, not for remainder of life as urso is deemed.
I think some doctors develop their own opinions and in my mind it isn't sometimes the right path to go. Given there is nothing else apparently available for PBC in the UK as yet anyway (though in the US a new med is about to be marketed - OCA) urso is the only one we can have.
I do think that some things are worth giving a try. When I started to itch badly in early 2010 I had to endure it almost 24hrs a day (only sleep 'switched it off') and was given nothing at all over those months nor offered. After starting on urso slowly the itch started to subside somewhat over time and fatigue I had in 2010 simply vanished at some point during 2011. My blood results started to come back better and though I am sceptical here (as I do think that taking urso can make them change to a certain degree and not necessarily a true indication of PBC) I do think that almost 6 years on from diagnosis I could have either driven myself mad with the itch or been in a pretty bad predicament.
At some point it might not seem urso is doing anything anymore but I think we have to go on with that hope as in my view as I still hate taking it every day, I have to say it has made a difference meanwhile.
I was told by my liver specialist i would have 10 years max with out urso and indefinite with. I dont understand your gi. I would seek out a liver specialist if i were you.
Hello I have been on Urso for nearly ten years and it has certainly helped me, but I have heard were some people do not respond to it. I suppose I am one of the lucky ones, it maybe worth a try, it doesn't stop the fatigue they are still working on that one good luck p.
Thanks everyone for your responses, The number one reason I didn't take immediately was due to the financial burden it would put on my family. I'm a person that wants more answers and don't automatically agree with drs., I've had bad experiences since early twenties (I'm not 51), due to my Trigeminal Neuralgia, took 10 years to diagnose. Finally had surgery to correct, but was told everything under the sun and seen numerous drs. , so I have trust issues. Now this new GI telling me it won't help, just floored me after everything I've read.
I agree with all the posts. I don't understand where your GI is coming from. I am clearly better with Urso. It's a no brainer. It helps the majority of people, the poor unfortunate few who don't benefit from it would truly love to be in a position to have a choice. I would do anything that give any hope that progression is slowed. The meds work for me! Thanks be to the Goddess 😆😆😆
My heptologist told me that while everyone responds differently, that for people diagnosed early, that URSO can be successful in dramatically slowing down the disease's progression. Fortunately my LFTs were barely out of norm, and my biopsy showed 'minimal' affects from the PBC. He told me that if my LFTs return to normal range, that the progression would likely be very slow and physical symptoms would be small.
As an FYI, my LFTs were found to be out of line 12 months ago due to routine bloodwork-checking for cholesterol. So i stopped with the cholesterol meds, but the LFTs didnt move t normal. I then went for an ultrasound which didn't reveal anything abnormal. In November i was sent to Hepatologist who completed a more thorough round of bloodwork which came back positive for AMA. Biopsy in January confirmed the diagnosis.
URSO began, and in late May a follow up round of blood work showed that my LFTs are normal except AST which is only a few points off. I am lucky to not have any physical symptoms to this point, though every time I feel an itch, I worry that it might be starting.
Have you asked your GI if and how many PBC patients he/she treats? you Might consider meeting with a Heptologist.
Even if the URSO proves ineffective there is a new treatment, and hopefully more on the way.
Like most people here, I would add that this is one of the best places to come for information or with questions. I've learned a lot, and has helped prepare me for when I meet with my doctors. The internet is filled with lots of old information and can be scary.
I was dx during routine bloodwork prior to getting a colonoscopy. AMA positive, elevated LFT's are all I know that they determined it from. Because the doc called me over the phone, stated good news negative for hep a and c, but I do have PBC. Then told to look up on the internet and if I had any questions to contact. In the meantime, he had prescribed the urso at the pharmacy and to take them rest of my life.
I since moved and now following up with a new GI, that told me Urso would not help if in fact I truly had PBC. That's they way he said it, he had all my records from the previous GI, so that's why I'm confused. He also stated there was some fat on my liver, which the other GI never mentioned.
My take on my 5 min visit with the new GI, was he was not concerned and it was not a big deal.
I don't have all the information about the disease or the medication but if one doctor told you one thing and another told you something completely different, I would try a third doctor, making sure that it is someone who has some knowledge and experience in the disease and ask that doctor's opinion. You wouldn't want to listen to the second doctor and miss the opportunity to keep the disease under control if he's wrong. You wouldn't be able to get that time back.
The early scientific studies weren't clear about whether URSO worked mainly because the disease is somewhat rare and the progression slow. In the last few years, several legitimate studies have shown the benefit of URSO in slowing progression for most diagnosed with PBC. It is variable; however, in that there are non responders and incomplete responders. The vast majority of those of us who aren't responders are younger at diagnosis and have fairly high ALP at diagnosis. That would be me. Diagnosed at 37 with ALP of 1400. URSO has lowered my ALP to an average of around 400. The sweet spot is below 160 for slower progression and better outcomes. I've been involved in clinical trials for other possible drug treatments. Nothing so far, but I'll say the trials will only typically enroll you if your ALP is over 160 and you've taken URSO for at least a year. Anyway--I'm a librarian and was a medical librarian for 3 years. That doesn't make me an expert, but it does mean I've read all the medical journal articles. URSO is what is working right now for most--other things are being tried like finofibrates, biologics, cholesterol lowering medications, and anti-virals. A new drug has just been approved in the US for treatment of PBC for those of us who don't respond to URSO. Obeticholic Acid. Trade name Ocaliva. It is going to cost 80,000.00 US dollars per year. It has been a bear to try and get approved, but I'm hopeful. Anyway--this is all to say--the URSO is your first step, and hopefully you won't need anything else.
First off, the article cited was presented AT EASL by someone from Serbia (not known for being the pinnacle of PBC knowledge), not by EASL. It was criticised heavily at the time and quoted in many other presentations for not being best practice.
Just so you know, "all cause death" includes bus, car and plane crashes, cancer, lightning, gun crime, etc so I would be a little stunned if Urso was able to improve "all cause death" statistics.
Kauthement, there have been some good answers below. Please contact the Foundation directly and we can help answer specific question directly within your context.
Thanks for sharing. After reading this article I am skeptical about the statistical methodology used in the meta analysis. The study is a meta-analysis of studies conducted across populations using varying research methodologies; furthermore there is no explanation of the methods used to normalise across the various studies.
The analysis is further confounded by looking not exclusively at PBC disease progression or even at the broader category of deaths from 'liver failure' or 'time to requiring transplant' but instead the analysts have expanded into a broader--and in my view a much less specific measure--the catch all "all cause mortality."
Urso wouldn't reduce "all cause mortality" in PBC patients or anyone else because it is confounded by deaths from cancers, automobile accidents, homicides, suicides, and ALL other disease states related or NOT to PBC. Trash science and until I see otherwise I'll take the evidence that Urso at a minimum reduces the progressions of PBC in the majority of patients, and appears to even full stop progression in a small number of patients.
Since Urso has virtually no negative long-term side effects I'll take the risk that since PBC progression, deaths, and requirement for transplants have all decreased significantly since the advent of Urso, while absolute prevalence has increased, that it at least does no harm.
I'll step off the soap box now, but please don't stop taking your Urso on the basis on one, possibly-flawed study and the opinion of one gastroenterologist.
Thanks, Lizzy! A few typographical errors, but I'm hoping everyone gets the gist. So much pseudo-science out there it's hard to understand what's real. I'm a researcher by nature/training and found that analysis to be highly suspect. Frankly, I'm surprised it was presented at a conference at all.
I was first dx'd in 2008 with positive AMA and liver biopsy. At that time I was told I was in Stage 2. I took Urso initially and responded well with decreased LFTs, etc. I took the meds regularly for a couple of years, then for various reasons stopped taking them. I allowed a busy life and family needs to cause me to neglect my own health. In May 2016 I returned to my GI in an effort to better care for myself. My LFTs and other bloodwork were not good, leading to ultrasound and referral to hepatologist. Now I have some cirrhosis, and though I have no itch or fatigue, I have edema and Pancytopenia (attributed to PBC by the hepatologist) and I'm terrified I may progress into failure at any moment. (Incidentally, after reviewing the slides from my 2008 biopsy, the hepatologist said he would characterize my stage as 3 at that point.) Now I faithfully take my Urso twice daily. My labs have shown minor improvement in a short period of time. All this to say, I won't neglect taking the Urso now. If my LFTs are improving, I feel at least the stress on my liver must be somewhat decreased and that I count as a blessing. Blessings to you!
Just wanted to add that I didnt start Urso soon enough and I now have cirrhosis. I was in hospital for six days recently with heavy bleeding varises.....horrible experience and bow have to have banding on the varises in the gullet every month for 3 mrhs. . So for the sake of a tablet do all try to keep on Urso. It might not be the best but its better than nothing. Btw my lfts change too sometimes.
I know you have had so many responses, which is great because I think it is a really important question. In reading through the posts I was thinking why aren't you talking to the PBC Foundation? Then I read Robert's post. Please do take him up on his suggestion of contacting the Foundation. In my experience (of phone conversations with them and direct meetings with Robert at workshops) they don't tell you what to do but they know a heck of a lot about PBC and all things PBC related. And to cap it all they are really nice with it 😊 In my opinion what the Foundation don't know about PBC probably isn't worth knowing yet. They may not be clinicians but they are experts in information about PBC.
As you can see I'm a bit of a fan but having been involved with health related services most of my life I think they are exemplary. They are a small organization but they are well respected and punch well about their weight internationally with regards to PBC.
I seem to to be on the soap box that Carol vacated, so I too will now step down 😉
Hi your right the liver foundation as helped me so much. My doctor is rubbish and I mean rubbish the only person he has time for is himself. I live in London and the foundation told me there are 2 hospitals that have liver units. I am now waiting for an appointment. I go to see my doc on the 12 Aug after a year of waiting appointment been cancelled 4 times. Been Urso for for year can't wait to be seen by a professional that specialties in PBC having a bad time at the mo. X
I too changed my hospital and consultant (from a gastroenterologist to a live specialist) after speaking to the Foundation. What a difference! It's great to feel in safe hands. Good luck with your consultation. Cx
I concur with others that the study's findings are preposterous, and are at odds with the findings of other studies. Was dosing controlled for? Urso is effective only insofar as it's taken consistently, and at the proper dose. As others have noted, "all cause mortality" is not an appropriate measure. PBC is often co-morbid with other autoimmune diseases. So if someone dies from another autoimmune disease, in this study, it counts the same as if they died from PBC. Finally, even accepting the numbers in the study, the mortality risk ratio for the Urso to non-Urso group was 0.96. This means that there was a 4% decline in all-cause mortality from taking Urso. That number happened not to be statistically significant, but it's still a decline. It's not like the ratio was 1.00 (or something greater than 1). And the study acknowledged significant improvements in liver blood panels for those on Urso--which is shown in the Mayo Clinic Risk Model and many other well-sourced papers to be linked to improved prognosis. If you have a PBC diagnosis, and can tolerate it, I suggest taking Urso. It's shown safe and effective, and is the only approved treatment.
I was dxd in November but my GP spoke to me about her thoughts in July re PBC. We sat and discussed everything out there info etc. I can just say my bloods were way higher than should be and after taking Urso they have come down ,yes they do fluctuate but nothing like they were.
I was confused too so I emailed PBC team on here and also got all information I could from Livernorth including a great DVD.
I'm not sure your GP is the right person to tell you not to take Urso, for many it slows down the disease, there is no cure or other meds as yet but surely slowing it down is a good thing. It may not help everyone but it does a large majority.
I have been on Urso 4 years since I was originally diagnosed. I am grateful every day that I am a symptomatic. My suggestion is to see a Liver specialist, my GI Dr. didn't even know that there was a promising drug for PBC in trials, and has since been approved!
my specialist says my response to URSO has been one of the best she's see. My numbers came down well over 50% and though are still in the high range, they're TONS better than before. The only number that reflects PBC is continuing to come down consistently. Slower now but it's still coming down. Also my bile salts have been cut in half in one month of testing after having been on URSO since April (bile salts were tested in Aug).
Here's what I know........URSO is the only drug to help and, yes, it is expensive, BUT it will prolong your lifespan. The ONLY way to know for sure if you have PBC is to have a liver biopsy. That will tell you what stage you are in too. If I were you, I would be researching all over to find a doctor that is well versed on this disease. Not all gastro doctors are. Good luck! Please take it seriously because it IS real.
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Unable to take Urso for PBC
To take or not to take Urso!!!!
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