Recently diagnosed with possible PBC. Had elevated LFTs. Next test showed AMAs 115. CT, ultrasound and biopsy negative.

[Supernonna]

Doctor wants me to take 500 mg of ursidiol 2x/day. If LFTs come down, likely PBC. If not further testing. Not happy with possible side effects of ursidiol. Wondering if I should get second opinion before starting it?

[Mcinnel2]

I'm sorry but definitely ask for a second opinion. I wouldn't want to have to take this drug daily twice a day for the test of my life on a dr saying if it's probably pbc, if your LFT's come down. It's not just the drugs and sometimes the side effects but it you want to get life insurance, travel travel insurance etc having pbc will bump up the premiums. Also more importantly it's your mental attitude. I couldn't accept I had pbc without a proper diagnose. It's an illness that can get you down mentally sometimes and I'm cross on your behalf that this dr clearly has no idea what living with pbc does to am individual. Sounds like he either is clueless or trying to save money. Good luck.

[Supernonna in reply to Mcinnel2]

Thanks for advice. I agree, I can't accept a possible diagnosis. I will be checking with my insurance company about a second opinion.

[Hidden]

Hello Supernonna.

I don't know where you are - US, UK, etc? - but I did once read a patient with suspected PBC should be started on urso (or UDCA) but it seems it usually never happens that way.

I presented to a GP (I am in the UK) back in early 2010 with itching and also at the time fatigue. My LFTs were abnormal and it went from there. My LFTs continued to slowly climb meanwhile. I had a scan and then finally after a few more blood checks (one was for copper) I was referred to hospital. I had further blood checks on my first hospital consultation but one was for antibodies (both AMA and ANA. AMA was positive to give PBC diagnosis, ANA negative). I was then started on urso with a PBC diagnosis.

Urso is also used for dissolving cholesterol formed gallstones. That is what it was originally developed for.

Myself I'd want an adequate reason to start any medication. I was loathe to take anything pre-PBC. But I obviously do not know your doctor's reason.

Urso can give a few temporary side-effects on starting. It is apparently 'well tolerated'. I got heartburn and a bit of bloating when I originally started urso but these dispensed within a few months.

[Supernonna in reply to Hidden]

Thanks peridot. I don't know my doctors reasoning either. His new nurse called and tried to explain it. I have yet to talk to doctor. Did get copies of blood results. My ALT and AST were elevated. ALP was slightly above normal. Everything else in normal range except AMAs. I'm in the US. It's hard to accept diagnosis with absolutely no symptoms.

[Hidden in reply to Supernonna]

Hello again Supernonna. Your blood results. Did you at all have what is known as a GGT result on your copy. If so that would be more than likely to be abnormal if you do have PBC and have elevated LFTs. GGT is one that is usually taken with a known liver problem. It apparently gives some indication of inflammation.

[Maribella]

I was recenty diagnosed too due to elevated GGT and ALT and positive for AMA antibodies. I have no symptoms of PBC but I had a high ESR inflammation marker of 66, normal is under 30. I was started straight away on Urso by my heptologist before any further testing. I have to go back this week to find out the results of my sonogram and extensive blood tests.

If you have to start the Urso, you may tolerate it well. I had no side effects and felt fine when I started it and still tolerate it well after 3 months. After being on it a month my GGT went down to 34 from 131, normal: 4-50. My ALT went from 61 to 37 normal: 4-50. I actually find I feel better too and have more energy than I had previously.

It's early days for me too and sometimes it's all overwhelming as there is so much you have to find out yourself. Waiting to find out the full extent of what's going on put's you in a type of no man's land, it's life changing. But I intend to make the best of it and endeavour to stay as well as I can. If it wasn't for this forum and all the great contributors I would be so much more anxious and worried about it all.

[Supernonna]

Hi Maribella. Thank you for responding. Was so glad when I found this forum. I had no clue about PBC. My doctor did not test ESR. I'm not satisfied with the way my doctor handled my case. He actually did not discuss it with me. I'm going to check with my insurance company about a second opinion.

I really don't want to start Urso on the condition that I might have PBC. I lost my husband to leukemia 3 years ago. He got it from chemo that he had for colon cancer. Seemed like every medicine he took there was side affects. I fear this whenever I take medicine for anything.

[Maribella]

Hi Supernonna, so sorry about what your husband and you went through, it's understandable that you would be highly wary of taking any medication. You should get a second opinion to confirm a diagnosis.

It's such a pity that your doctor hasn't communicated fully with you. I was disappointed with my GP's lack of communication with me too. I've been referred to a Heptologist whose option I have confidence in.

Like you my sonogram is clear, no liver damage, liver is smooth. My bloods are now 'pristine' (Heptologist's words) due to the Urso. He said the fact that my LFT's were brought back to normal by the Urso confirms the diagnosis of PBC.

I hope you manage to find a doctor to confirm either way if you have the disease. I was wary the first time I popped the Urso in my mouth and was expecting the worst. So when nothing happened, it was a relief. If you have to take them, I've read of many on here who have had no problems so that may be the case with you. My heptologist said that most patients tolerate it well too.

[Supernonna in reply to Maribella]

Thanks Maribella. Working with insurance to get second opinion with Heptologist. What was the dosage of Urso that you were put on?

[Maribella]

Hi Supernonna,

I see you are in the US, when I didn't get any information from my GP, I sent my blood results to a friend who is an ICU nurse in Florida. She showed them to the Gastro doctor in her hospital, he said that the AMA antibodies are diagnostic of PBC (so did my Heptologist). Apparently in the US you would see a Gastroenterologist for PBC. Perhaps another US contributor here could confirm this for you.

I am on the same dose of Urso that you have been prescribed 500mg x 2. I was told to take them all at once at night which I have been doing from the start.

You mentioned my high ESR blood test earlier, it was this test that started an investigation to discover why it was so high. The only thing that showed up was the AMA antibodies and thus the diagnosis of PBC. The ESR blood test is not usually used as a marker for PBC just for inflammation which could be anywhere in your body. Sorry, I didn't explain that properly

I also have hypothyroidism and had my gallbladder removed, these are two of the several health issues that go hand in hand with PBC.

Again I wish you well with all of this, I'm still in a bit of a shock about it all myself and what could be ahead. But I've been told that with the Urso working so well that it's looking good under the circumstances. I'd like to hear how you get on, this forum and the PBC Foundation is a fantastic source of information and comfort, where would we be without it?

[cazz22]

Hi Supernonna.hope everything works out and you haven't got pbc.i was diagnosed purely cos ggt was high and had been for years.after convincing them I was tee total they did a scan on my liver which showed raised lymph nodes.i have no other symptoms and all of this was found on routine yearly blood check.i was prescribed urso after 3months but couldn't tolerate the capsules(severe painful bloating and diarreah)but thanks to this site realised I might be intolerant of the fillers in the capsules and told them I wanted tablets.i don't have a huge dose only 450mg a day but my bloods have dropped and tablets cause me no problems.still pretty peed off I have this tho and still half doubting I have.see my specialist next fri and intend to give him a real grilling.good luck

[2006]

I have been on urso since February and I don't feel any different. I am 65 and except knowing I have PBC and being scared of the future with this disease - - at this moment - - I feel great! Thank God!!

[PatinJersey in reply to 2006]

Hi 2006!

Almost the same situation here. I'm in NJ, and was diagnosed in April of this year. I'm 64, and feel fine. Feel no different. I get scared, but, as many people on here say you are more likely to die with this disease than OF it. Little help that does, I know. But, I consider it something to handle like high blood pressure, or high cholesterol. DIabetes (which I don't have) is same thing. People handle that their whole lives, but isn't as crappy sounding as PBC!! I think the name of this damn disease gets in the way.

By the way, my doctor here in Jersey who is very sensitive first told me I had Primary Biliary Disease. Then called in PBC without the cihhrosis. He takes a very easy going outlook on this. That's why I feel less scared every day.

Hope this helps and that you continue to do well.

[Supernonna]

Hi 2006. I haven't started Urso. Scheduled to see specialist in about a month. My gastro dr prescribed 500 mg twice a day. How much are you taking?

[PBCRobert Partner]

Hi,

First off the indelicate part- I would be very surprised if you didn't have PBC.

Some people speak of stages- stage 3 PBC doesn't actually exist. Stages are a measure of cell change within the liver, not of PBC itself.

However, there are 4 *phases* of PBC. The first of which is AMA + and asymptomatic.

PBC has 3 aspects which do not really correlate, particularly in the early days. These aspects are 1) daily symptoms 2) liver function and 3) cell change within the liver. One can be (even heavily) symptomatic with normal counts. One can have raised LFT's and be relatively asymptomatic.

So... would you rather be diagnosed and be taking medication that is shown too slow down the progress of PBC or not be diagnosed?

Is it possible to put into place financial arrangements *then* be diagnosed and begin Urso?

As an aside, this is a huge part of why we are fighting for a name change. If you haven't already done so, please do fill in our survey.