Why my doctor won't give me Urso?

Hello, all,

I am AMA M2 positive. LFTs high normal. GGT negative. ANA negative.

I do have some symptoms: indigestion, constipation, muscle/joint pains, itchy hands. I also have dilated bile duct from MRCP scan. (gallbladder is removed due to small stones)

It is said that starting Urso early can slow the progress. I am not sure why my doctor won't prescribe it to me. Is there any harm to take Urso before PBC is fully diagnosed?

Thanks,

Jane

16 Replies

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  • My doctor prescribed it for me because my enzymes was so high and I was AMA positive

  • Hello Janeing.

    Maybe due to you having normal bloodwork, GGT 'negative' (normal? Mine was higher than normal in 2010 when I started itching as was my LFTs) and perhaps your AMAs are not of a high titre. Apparently they have to be a certain measure for diagnosis as mine were a high titre along with intense itching any place on my body and fatigue and the abnormal bloods.

    Unless you have a definite PBC diagnosis a doctor doesn't seem to give out the urso. I had to endure 9 months of severe itching in 2010 from seeing my GP and going through blood tests and then a scan (showed normal liver and surrounding organs and even clear bile ducts) without being offered anything. And my LFTs were found to be over normal range and still climbing over the months prior to seeing a hospital consultant and being diagnosed with PBC due to the antibodies check.

    I did have the ANAs check with the AMAs and my ANAs came back negative.

    I reckon you'll just be monitored for any blood work changes and then it will be taken from there. I suppose thinking about it unless bloods are over the normal range then there'd be no use in taking the urso though PBC diagnosed patients once outside normal range who take urso and have theirs return to normal range continue to take urso as they've already been outside the range apparently so I suppose there's a risk they might become abnormal once again if urso is stopped.

  • Thanks for your reply, Peridot.

    It make some sense.

    If Urso works for a PBCer, do they have to take it for the rest of their life?

  • Yes, I was told URSO would have to be taken long term.

  • Is there another test or another name for the GGT test

  • Not that I know of.

  • Hi Jane, I am newish here too, just over 2 weeks.

    My URSO was prescribed without any info as to why, when I pressed the hospital Dr did I have PBC, he reluctantly said yes and called it Cirrhosis, not Cholangitis.

    Regarding blood tests here and I had so many questions. Have you thought about ringing the PBC Foundation and asking to speak to somebody who can give you expert advice? I was passed to Robert, I found him very informative, supportive and without any contradiction of the Gastro man I saw. HoweverI felt empowered to query what I had been told as after all, it is my health that is the issue.

    Those 2 calls to PBC were crucial, I rang my own GP and asked if I could see him, armed with the leaflet for health professionals from the PBC Foundation, he read briefly and referred me for a second opinion. I am now being seen by a liver specialist in a few weeks who said Urso is a good call while she gets to the bottom of what is going on with me. I originally saw a locum gastro Dr when I went to the hospital.

    You say 'my Dr', is this a general practitioner or somebody who specialises in the liver, not sure of here you are from in the world, so maybe a Gastro Dr? I believe from talking to my GP, many general Dr's have never met a patient with PBC. He had one patient but 25 years ago and a lot has changed. Hence he was pleased I had the leaflet.

    So while this answers none of your questions, I feel calling the PBC Foundation as somebody advised here me to do, has helped me to take some control and hopefully get a full diagnosis and then I can start to live with the outcome.

  • Hello Jo_Br.

    I take it you are in the UK as you refer to doctor as GP. I am in the UK too (unfortunately in England so have to pay for my prescriptions unlike Wales and Scotland, part of Ireland - I do think urso if prescribed for life should be free).

    Jennyhadenough is in the US and it has to be remembered I think that when we are in different countries, the system is different. Even though we tend to all have the urso for PBC from what I've read on this site since I originally joined in the beginning of its set-up, follow-up appointments do vary.

    Personally I think contacting someone in your own country might be the wisest of moves. USA does have its own PBC site known as PBCers that I have in the past had a glance on.

    I have found since I was diagnosed by a hospital consultant who is an hepatologist and gives talks to GPs on PBC (he informed me so when he diagnosed and at the time a GP I saw was down for one of these talks as he said when I saw him for the first time on registering at his practice) my dentist took more time finding out what PBC was than my current GP surgery (the GP I mentioned here seeing first time, he is no longer with that practice).

  • Yes in the UK, the question of country was to JaneIng the poster of the question, not JennyHadenough, who I am aware is in the US.

    In terms of country however, if the UK did not have a Foundation, I would call another country. I use a prepaid card or a fab phone app for calling relatives in the US, Australia and Ireland. Penny a minute and they use the same system in their country. However yes agreed to call your own country's advice line possibly best practice, hence I enquired to Jane's, not Jenny's place of living.

    I am lucky, my GP has rung several times each time after research on my results and possible condition. If the hepatologist I see is not able to diagnose all that I have, my GP and herself have already talked about referring me to Addenbrookes, where you will possibly know they specialise in PBC, not far from me luckily too.

    My dentist will be given a leaflet, I expect she will be not interested, she took over when a fab dentist and friend died. Possibly similar in practice as your original GP.

    Personally for myself, if it was not for talking to the Foundation and then my GP, I would be waiting for another 6 weeks, with a pile of meds I may not need already consumed, not enough Urso for a child, (I am skinny and light in weight but not that skinny) and a guy who just talks in airy fairy ways much as if I was a child too young to be told the truth.

    Hope this clears up your confusion with my post :)

  • Is it important to tell your dentist? What happens to our teeth? Sorry to hijack conversation.

  • Possibly because the dentist may need to prescribe medication that may not be beneficial for your liver or have contraindications with your PBC meds.

  • Hello Wocket, yes as Jo_Br says, due to any medication (usually antibiotics - I've never had any from mine as yet but my sister used to do) but as I have found, since I hit 50 (I am 53 before the end of the month) my dentist mentioned being female (meaning the menopause - I started that 4yrs ago and think I'm now through it, thankfully no issues) and also with having PBC our bones can perhaps be more at risk due to the malabsorption of fat soluble vitamins, D in particular (as well as A and K).

    I had a check-up recently and my dentist (who I've been seeing 10yrs now, same one each time) said there doesn't appear to be any bone loss or gum problems. I have had a tooth that looked to start dying a few years ago. It has been mentioned and last year he said that it could either just turn brown or fall out. In the last few months it has started to loosen. When I went I was informed by him he was going to just leave it due to there being no pain nor problems as it will fall out. I expect by it falling out it will heal better than being ripped out as in extracted. I was happy with that as I did expect to go and him to whip it out.

  • Thanks Jo_Br!

    I am in US. The first doctor who found my elevated AMA is a Gastroenterologist. Since my LTFs were barely elevated, he did not diagnose me with PBC so no medication. He said I may develop PBC when I am 80. (I am 63 now)

    He retired 2 months later. I went to another doctor who was an ER doctor now practicing Functional medicine. He told me to get on AIP (auto immune paleo) diet. I tried for 3 months then stopped. it's so restrictive that I feel like a sore thumb in any family and social gatherings. Traveling is worse. I feel bad when my husband gave up his favorite food to look for a restaurant that serves food I can eat. It's frustrating when you can't find a place to just have a quick bite.

    My 3rd doctor is a Gastroenterologist specializes in liver. He only had one PBC patient before who obviously did not continue with him. He just kept checking my LFTs, IGM. Since all are normal, he did not prescribe anything.

    My 4th doctor is a family doctor who was highly recommended by a nurse friend. He is the one who ordered a bunch test including the MRCP. He seemed to be more concerned than other doctors. He called a friend who is a liver transplant doctor and ordered more blood tests. I am going to see that liver transplant doctor in mid May.

    All in all, if Urso does no harm, and it helps dissolving the gall stones , which I believe I have, why wait until the damage to the liver begins? Don't you want to stop or slow the wagon before it falls off the cliff?

    I will ask the liver doctor in my May appointment but want to check with this wonderful community first. It help with my conversation with the doc in May.

    By the way, is Robert's phone number? What's the proper time to call?

    Thanks so much for your help!!

    --Jane

  • Hi Jane, glad you are seeing a liver specialist, I also understand the gazillion questions you must have. Here is the site for the PBC Foundation pbcfoundation.org.uk/ The number is: + 44131 556 6811 We may be 5 - 7 hours ahead of you. Today is a Bank Holiday in England, not sure about Scotland, but maybe call tomorrow (your morning) will be our mid-afternoon.

    Good luck with getting the right answers.

    Jo

  • Thanks so much, Jo!!

    Jane

  • I get regular check ups but my dentist says I have gum recession even though I look after my teeth. I always had good teeth and gums until a few years ago so would love to blame problems on illness rather than my inability to look after them 😏

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