Does anyone know if URSO would br prescribed to someone with advanced stage PBC at diagnosis?

I would be interested to know if URSO would be prescribed to someone possibly already at advanced stage when diagnosed with PBC.

I am in a bit of a quandry and do not know what to do for the best!! I think my 78 year old mother MAY have PBC!. I was diagnosed with PBC 19 months ago and from reading the PBC patient information booklet I know it can run in families. And have identified that my mother has 7 out of 8 of the common symptoms (not itching) and 3 out of 5 of the common signs of PBC in more advanced PBC - (not jaundice, not sure about reddened palms). She has had numerous scans and probes etc. However she has never been tested for PBC as far as I am aware. PBC has certainly never been mentioned by anyone as I accompany her on all of her GP/Hospital appointments. She has for many years suffered with angina, rheumatoid arthritus, dry eyes, abdominal pain, fatigue hieatus hernia, diviticulitus (please excuse spelling). She has restless legs and for the last year has had many problems with her lower legs being very painful, swelling and leaking. I am aware that some of the PBC symptoms can also be attributed to her other conditions. But to me - I may be wrong - but it seems too much of a coincidence that my mother is showing all these signs and also because I have a positive diagnosis of PBC already. My PBC was picked up following blood tests - AMA result. The only symptoms I presented with were very painful joints and fatigue. When my diagnosis was confirmed by liver biopsy I was put on URSO straight away.

I ask my question because from personal experience I do not want to have to put my mother through having a liver biopsy unecessarily. From all the signs she could have advanced PBC so if URSO is not prescribed for advanced PBC she would have had to go through an invasive and painful experience for nothing. I know it sounds as if I am putting the cart before the horse so to speak as she hasn't even had an AMA test yet. But, she is not very well at the best of times and has a lot on her plate with being a full time carer for my wheelchair bound father. She is a proper worrier so I do not want to cause her any unecessary stress etc by asking for tests to be done on her if there is no benefit at the end of it.

She is such a worrier I have not even told her that I have PBC, she thinks I have 'a bit of

arthritus'. If I told her otherwise she would blame herself because she gave birth to me so anything wrong with me would be her fault. See what I am up against! And I would have to admit to having decieved her for 19 months - a thing I do not relish.

I would be grateful for any input.

15 Replies

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  • Sorry you are in such a tough spot. I understand your desire to spare your Mom any worry and/or invasive procedures.

    As far as I know, Urso is the only treatment and I believe they would prescribe that at any stage (except maybe cirrhosis) in order to slow the progression. I would definitely have her blood checked for AMA. Many people are diagnosed based upon that alone. Given her age, they may opt not to do a biopsy and just treat her with Urso if she has positive AMA.

    If you want to spare her the worry, perhaps you could call her doctor to discuss it with him/her and ask them to add that test to her next blood work. Then, she will only need to worry about it IF she actually has it. If you think about it, doctors test us for all sorts of things prior to us really knowing what they are looking for....so, I don't think it would be deceitful to mention it to her doctor without her knowing about it (for now).

    Best of luck! I'm praying that your Mom doesn't have PBC....sounds like she has enough to deal with.

  • Thank you KarenRL for responding. My mother has regular blood tests for her puernicious anaemia (excuse spelling) so they could do the AMA test at the same time...great idea. Her B12 injection is due next month so they should be checking her soon.. Yes I'll get on to that straight away!!

    Thanks for support its much appreciated. Best wishes to you

  • Hello.

    Toughie that one is I think.

    Obviously I'm no medic tho' I think like a lot of us prob know that bit more about PBC than the doctors I seem to have seen so far...

    ....but if it sounds like your mum may have PBC then I can't see her actually having to go through a biopsy if a blood test could be used for the AMA. I know I was informed (and also read) that biopsies aren't actually the norm anymore unless there are queries with the AMA here in England. (Not sure about our Stateside friends.)

    I know for myself I'd not have ended up seeing a doctor but for starting to itch and I'm one of these who thinks, what you don't know........ as it is obvious I did have the fatigue prior to the itch but never thought anything about it.

    I'm pretty sure urso would be still attempted in an advanced stage of PBC as in my opinion I've always seen urso as more a supplementation of bile rather than a medication so it possibly could be an aid BUT I also think that it would be noted medications your mum is on currently first of all.

    I have heard it can perhaps run in family and I only suspected myself on thinking after diagnose that perhaps my gran who was my mother's mother may have had PBC but it was never discovered and she obviously didn't have the troublesome itch (she had some symptons that could possibly have been due to PBC but nothing that warranted her seeking medical advice for).

  • Hi Peridot

    My mother is on alot of medication...11 different ones a day including 2 asthma pumps...she rattles poor thing!

    Best wishes

  • i don't know if this helps but i am in advanced stages of pbc and have cirrhosis, the day i was told that the disease had progressed to this point i was put on double the dose of urso and told that if this didn't slow things up and i can tolerate an even higher dose then that's what they would do. I guess the next step would be to talk to your mom and a doctor. I wish you and your mom well.

  • I am confussed. I thought URSO was perscribed based on a persons' weight. So if you weight did not change why did the dose change?

  • I think you might find that urso can be increased if it is suspected/known that you have advanced in PBC to a certain state where I expect bile could become more of an issue hence more via urso.

    Also as urso is given on the basis of mgs per kgs of body weight, I did once read some research with urso and differing doses. I guess a case like itchyscratchy states, depends then whether your system can tolerate it.

  • thanks for the information. Information is power and any power I have over PBC is all the better.

  • Thanks itchyandscratchy, its encouraging to know that urso is not ruled out for the advanced stages. I hope you are benefiting from the increase in the dosage.

    Thank you very much for your time and I wish you the very best

  • hi kosy2,

    the consultant i was under has referred me to a prof who specializes in this field, the original consultant told me the new chap was a strong believer in upping the dosage of urso if deterioration continues (as long as i tolerate it) so i guess that's what they will do, at the moment i take 22mls a day and weigh 8stone 6lb. (5mls is same as 250mg)

    i soo agree with you info is most definatly power, and we all need to be pretty damn strong to put up with this disease. x

  • Hi all -

    When I was very first diagnosed ( and I rejected it for another year) I "only" had the PBC and the Dr. wanted to put me on the Urso immediately. I do not remember the dosage. A year later (5 yr. ago) when I saw a new Dr. and he diagnosed the AIH with PBC overlap and the PBC as what we here in the States know as Stage 3 (85% Cirrhosis) he put me on 900mg of Urso, which I am still on.

    Mumofthree - This sweetheart of a disease was diagnosed when I was mid-60's (I am now 70) and from what you have written it is highly possible that your mother has this. However, I totally agree with speaking with her Dr/GP first, especially since she is such a worrier. No sense in giving her something else to be concerned about, eh?? -:)

    Keep your chin up and stay in touch. -- ga

  • Thanks Tumbleweed41

    I have spoken to my sister about my fears and we have both agreed to make an appointment with the GP to air our concerns regarding our mother.

    Thanks for your input it is much appreciated.

    Take care of yourself

  • Hi MO3 given your mums age I was wondering what specific symptoms of pbc do u think she has some of them could simply b down to her age and other conditions perphaps symptoms of these conditions that u may not be aware of. I can understand u wanting to get her checked for pbc but maybe a simple lft test may be enough ut agree with others best to discuss with ur mums dr. One thing I would like to add though is that a practicality of being diagnosed with conditons (that someone recently pointed out to me) is that you have to review your life/home insurances etc as you must legally declare illnesses when you have these insurances to have proper cover in event of having ever to claim on any policies. I'm telling u this i hope pre ur mum having tests with your father in mind if u understand what i mean.

  • Hi LM

    My mum has been diagnosed with angina, asthma, rheumatoid arthritus, osteoporosis, diviticulitus, hiatus hernia, dry eyes and possible diabetes!

    PBC symptoms I think she has are:

    - Fatigue...yes could also be down to age, heart condition, asthma

    - Dry eyes/mouth... diagnosed with dry eyes following bout of conjunctivitus, referred to optician who carried out tests and found she does not produce tears, she now has a gel which she puts in her eyes every day. Dry mouth always complains of being thirsty..could be just that or could also be related to her diabetes, not sure symptom of age

    - Indigestion...could also be down to Div or HH, not sure symptom of age

    - Joint pain...could also be down to age, RA and osteo

    - Abdominal Pain...could also be down to Div and HH, not sure symptom of age

    - Diarrhoea..ocassionally mentions loose motions, could also be mentioning because of worry due to 10 months ago having serious bout of C.Diff. not sure symptom of age

    - Easy bruising... could also be because of use of steroids to treat asthma, very dark pigmented skin and scarring on arms, not sure symptom of age

    - Reddened palms...could also be because of RA, hands very disfigured, finger joints very red and boiling hot, not sure symptom of age

    - Swelling of ankles...well all the way from knees down..figgity legs, could also be down to heart problem odema, not sure symptom of age

    - Swelling of abdomen...not sure symptom of age, could also be down to Div and HH, complains of pains on right side just under breast

    Does not show signs of jaundice, itching and has not mentioned colour of stools or urine.

    I know exactly what you mean about insurances etc, they will always find a way not to pay out anyway.

  • My godness ur poor poor mum does sound frightfully like it could be pbc r some of those conditions, the question would be if it is will the diagnosis of it and the commencement of urso help slow its progression which is ultimately the reason urso is normally prescribed though in my case it was first given to me to see if would rid me of the itch which unfortunately it didnt but i have been taking it for 10yrs and when i was off it for about 5 mths in pregnancy my body did not react well( I will write a blog soon re my experience to date on that particular bit) but suffice to say since went back on it my condition stabilised so i think it most slow disease progression down. I hope the dr helps you to find out the best way forward for ur poor mum. bfn take care of u and urs.

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