My wife has PBC. The URSO made her feel sick and was vomiting soon after taking it. Now she won't take it again. I heard about the Australia "Liver Doctor" (Dr. Sandra Carbot), and ordered her concoctions some time back, but its just recently my wife has started taking her"Livatone" product. Has anyone experience of these products?
My angle wife has suffered a lot from bloating, flatulence and more recently bad stomach pains going right across her stomach. They don't seem to stop. Anyone know what can be causing this to happen? Is it because of the PBC?
She saw a "Liver Specialist" about 1 month ago after having quite a lot of blood tests. He diagnosed PBC and prescribed the URSO with a view to reviewing the URSO effectiveness after 3 months. He said my wife had early stage PBC, although he did not arrange for a biopsy.
Can one competently diagnose early stage PBC without an actual biopsy?
I can't bear to see my wife suffer, each pain she gets is like a knife through my heart. I've offered her half of my liver if I've the same blood group as hers, and if a transplant ever becomes necessary. But, I'm 62 years old and she's 63 years old, and I am afraid that if it ever comes to a transplant situation the surgeons may refuse my liver because of my age?
Anyone with any knowledge of this or suggestions is much appreciated.
Regards,
Nicholas
Written by
Nicholas101
To view profiles and participate in discussions please or .
I'm unfamiliar with Sandra Carbot's liver protocol. But, please keep in mind, PBC is an "Autoimmune Disease" that will "eventually" effect the liver. In other words, if she's in early stage, then most probably her liver isn't the issue yet. Trying to balance out her immune system is. So, doing anything to "fix" the liver at this stage may actually be of no use. At this stage you can baby the liver. Don't drink, watch simple carbohydrate intake and sugars, fats etc.
I was diagnosed through blood work and a biopsy. I've been told a "Fibroscan" is as effective as a biopsy. I'm in the U.S. and here they do biopsies and labs. In the UK it's usually a Fibroscan and labs.
I'm sorry she's not tolerating the URSO. I didn't at first either. Have they ruled out other stomach issues along with PBC? I ask because I had gastritis. I couldn't take URSO with gastritis. Lots of pain and nausea too. It turned out it wasn't the URSO but my gastritis.
They need to rule out any other stomach issues that maybe going on before they give up on URSO. Also,when her stomach issues resolve or are known and they want to reintroduce the URSO, make sure she take it with a full meal. During her eating... Or immediately afterwards.
If one is going to be diagnosed with PBC, early diagnosis is the very best news!! It's a very, very slow progressing disease and with URSO it progresses even slower. It's not a death sentence. Online information is scary. Here on Healthunlocked where you'll find women and a few men, who actually have PBC and can better inform you and answer your questions.
Join the PBC foundation above and read all you can here on this forum. Take a deep breath. It's going to be OK.
You are very sweet to be so prepared to hand over part of your liver. She is fortunate to have you looking after her. Great picture too.
I was taking Ursofalk for 15 years for the last two years I got horrible itching rash covering any part and every part of my body also felt sick most of the time. I have stopped talking my Ursofalk and feeling much better now. I need to go for blood test to know the difference also to ask if there is an alternative, just waiting for my doctors to come back from thier holidays
I have got early stage of pbc was diagnosed two years ago and been on ursofalk capsules 4 a day but have no problems with them. As I take two in the morning and evening.
I have started on urso and have no side effects so far your wife needs to talk to the specialist maybe the new med ocaliva may suit her better the only problem i have with urso is constipation and i find a high fibre diet helps
Don't rule out other stomach issues causing the bloating and pain, I was diagnosed with IBS and had those very symptoms, so I did a fodmap diet with a dietitian and now as long as I avoid the offending foods Iam free of it at long last. Also celiac is another autoimmune issue with the stomach symptoms you mention it may be worth getting tested for that as well.
Has she tried building up the URSO dose slowly some find that a help. For me even after 8 years I still find taking mine in 2 split doses suits me best. I dont take any kind of supplements unless my consultant agrees it's okay to do so, a good balanced diet is better.
If you join the PBC foundation (link at the top of this page) they have a host of up to date information backed up by there medical teams and they have advisors you can speak to if you need help. Take care.
The usual route to the diagnosis of PBC is the 2, key, separate blood tests. Particularly in the UK, liver biopsies are usually only done if there is any doubt about the blood tests.
1) If she has the autoimmune factor present in her blood: AMA-M2 [AMA = antimitochondrial antibodies, and sub-type -M2 is the type of AMA that is responsible for PBC], then that is one strong indicator for PBC.
2) The other necessary blood tests for PBC, involve checking all the enzymes that are involved in the liver's normal functions, as well as other bloods that check general levels. If the liver function (blood) tests (lfts) are abnormal in a way that is typical of PBC, and they stay like that, then that is a main indicator of PBC. This along with the presence of AMAs-M2 is enough for a diagnosis of PBC.
If these 2 blood tests have been done, and checked over a period of time, then that is the main accepted path to the diagnosis of PBC. Liver biopsies can confirm PBC, but are often only done if the blood tests are inconclusive.
I would ask for exact copies of all your wife's tests, just to make sure that the correct diagnostic route has been followed ... but if these two tests have been done and indicate PBC, then Urso is the main drug, to slow down the progress of PBC. There are other drugs in the pipeline, and oclavia is available, now, but this is used in conjunction with Urso.
If the tests clearly show PBC, then Urso is the main answer. As Candy says above, it helps to build up the Urso dose slowly, and careful control of diet to help the liver in all other ways will help too - you should have been given advice on this eg lower fat intake, smaller meals - The PBC Foundation give a lot of diet advice on their website.
Contact the 'PBC Foundation' [link at top of this page], their website is great, and if you join (it's free) you get access to loads more help. There are contact details to phone or email (they are UK based) their trained advisors, who are lovely.
It is a condition that can be managed, but it is not going to go away, and we do have to become our own best experts.
Biopsies are more the norm or "gold standard" in US for diagnosis if other tests are inconclusive. Often this depends on the GI or hepatologist who will recommend one.
Both my GI who is also my Primary Care Physician & my hepatologist requested that a biopsy be done for diagnosis.
US has been slow to adopt the Fribroscan for whatever reason.
Biopsies can definitely be helpful if other tests are inconclusive. However we need to remember that they take 1/50,000th of the liver, so by no means are guaranteed to give a conclusive diagnosis. I had one myself as there was a question over AIH overlap. Fibroscans are not used to diagnose. They are used to gauge damage, specifically stiffness, of the liver.
I also got very ill from urso so they had me take half a pill after eating this has helped i am now on half the dose i am supposed to be on but i will eventually build up to try the full dose. The biopsy can help rule out other liver diseases so it may be something to talk about with the doctor as you can have other liver diseases with PBC as many here do. In US where I am at University Of Michigan liver clinic the protocol here is, a liver biopsy with positive AMA and elevated liver labs . I hope you get some help there and let us know how it goes along the way.
Does she still have her gallbladder? That sounds like me for months before I lost my gallbladder. I already had pbc and would walk the floors in such belly pain. I know you're supposed to hurt in the right shoulder or something, but I had this horrible stomach pain and Gas-X was the only relief. When I went to the hospital, they said I only had some small gallstones, like sand, and not to worry. A few months later I had emergency gallbladder surgery. Those symptoms can also be a side-effect from Livatone. I hope she finds the cause and some relief soon.
Sir, u are so sweet. Your thoughtfuness for your wife is incredible. My husband is the same way. Husbands like u guys have a special place in heaven. We are so blessed to have you men in our life.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Diagnosed with PBC in 2011 after scan AMA and liver biopsy. Blood test annually. No other appointment.
Am I the only one not taking URSO with a PBC diagnosis?
Help My mom was diagnosed with PBC and we need answers if anyone can help.
Stages of PBC-Prognosis-Next Steps?
