Please can anyone tell me how long you had ... - PBC Foundation
Please can anyone tell me how long you had been diagnosed with pbc before you was started on medication does it go on your blood levels
i was started on medications,right after i as diagnosed with PBC
I was started on medication straight after I was diagnosed with PBC, and within a couple of months or so my bloods came right down.
I was put on URSO at the time I was diagnosed after waiting nearly 9 months for a diagnosis. I don't know if it is dependent on the levels shown in your blood tests as to whether you are put on medication but URSO was what was mentioned to me when I was referred to a hospital consultant by my GP when the consultant thought it was PBC but I had to have further blood tests to confirm it. Are you under a consultant - if so he/she would have written to your GP with his/her diagnosis and advising whether or not to go on medication and advising the dosage . URSO is dosed on your weight. If in doubt ask your GP or get back in touch with the consultant via his secretary. I have only been on URSO for 5 weeks so have not yet had any follow up blood tests but other reports on this site seem mostly to be favourable in that URSO had reduced the blood readings. Do not sit in silence - many GPs seem to be unaware of the condition from my reading. It is your health so make your voice heard.
I was put straight on URSO on the day my consultant confirmed my diagnosis. I take 3 tablets a day. The amount of tablets taken varies between us. I don't know how it is worked out, but I don't think it is all to do with weight because I know people who weigh more and less than me that have a higher dosage.
Actually, just had another thought. I also have another autoimmune condition that affects my liver (AIH) and I have separate medication for that so that might account for my lower dosage of URSO for the PBC.
i was not given urso for a coupleof years after diagnosisas consultant said it would make me gain weight! started urso 18months ago when dry eyes worsened and tiredness and joint pain.weight about the same!
For me I've not actually gained any weight since starting urso almost 2yrs ago.
I know some on here who also have AIH tend to say they have courses of steroids and I know that steroids can be a cause of weight gain.
I waited about 9 months for a diagnosis and was prescribed Urso on the same day that the diagnosis was made. After 4 weeks of taking it, my ALP and GGT had come down quite dramatically. I haven't noticed any weight gain but it is early days.
There is very good advice on the PBC foundation website - including a leaflet for doctors. If you sign up to the PBC Foundation via the site, you can request a copy of the PBC Compendium. The compendium has good comprehensive information about PBC and living well with PBC. It includes recommendations about medication etc.
You could point your GP in the direction of the website or give him/her a copy of the leaflet.
It took three years for them to get a right diagnosis for me as they kept getting it wronge, then i waited three months untill my next appointment to be given urso.
I was put on URSO when I was diagnosed but that affected my absorbtion of thyroxin and they have had to treble the dose of that
I was put on 300 mg. of URSODIOL 2 times a day when I was diagnosed.
I started with itching March 2010 and was diagnosed with PBC in Dec 2010. Only then was I started on urso despite having repeated abnormal lfts which continued to elevate for some mths prior (tho' for some strange reason 2mths before I got told I had PBC from my print-outs I got after diagnose I discovered that my lfts had started to descend and that was before urso, not much but there must have been something I was perhaps doing or eating that was starting to give a slight improvement).
I was started on Urso, Milk Thistle and a multi-vitamin immediately after receiving my diagnosis. My Alp's, lft's, GGT, AMA levels have continued to go down. My lft's are just slightly above normal. I was diagnosed 10 months ago. I have lost 16lbs because I have changed my diet to one that supports liver health.Although I am still tired and sleep more at night that I ever used to before PBC, I feel better. It is important to take a proactive role in your care. Ask questions, utilize the foundations information and share the information with your Doctors. At my next visit, I intend to ask for blood work to determine whether my vitamin and minerals levels are normal, as malabsorption could be an issue . If the Dr denies my request, I will insist, or I will find someone else who will do it. Doctors don't like being told what to do, so I will have to make sure I choose my words carefully. 
Hi Healthangel can I ask what dose of milk thistle do you take and was this recommended by your consultant?
I was diagnosed with PBC 20 years ago and was put on Ursofalk around 10 years ago - since then my LFT's have improved and are now slightly above normal.
I would love to hear more about your journey. 20 years gives me hope of having a long life.
Judi
There are a lot of us out there - those who have known about their PBC for 20+ years - and remember, there is always hope. As you have probably noticed we all experience PBC differently i.e. symptoms etc. - I have been lucky (from what I have read from others who have the condition) other than extreme fatigue (which was why I went to the Dr's in the first place - took two years for the diagnosis) and acid reflux, I have had relatively few symptoms over the years. I'm not saying I didn't have any others, I did, but they just came and went and didn't really impact on my life. Six months after the diagnosis I suffered the first of four heart attacks - the last, about 18 months ago, seems to have triggered a number of the symptoms - itch in the ears, nauseas, muscle weakness and the one that is causing me the most trouble at the moment, joint pain. Though my GP is unconvinced I suspect that one of the new medications given to me after this last heart attack triggered the symptoms.
I have followed one piece of advice I was given by a naturopath when first diagnosed - and that was to drink a couple of glasses of warm water with lemon juice first thing in the morning. I could be wrong, but I think the results of drinking this first thing may have been flushing (and believe me, I flush lol) out the toxins from the liver and be the reason I have had so few symptoms hang around. As I said, I could be wrong about this - it works for me but remember, with this disease (and others) what works for one patient doesn't necessarily work for another.
One final bit of advice and probably the best one I can give you - remain positive. There is life after diagnosis - perhaps different than before, but life nevertheless.
Di
Tomorrow I will start your regimen of warm lemon water. I also feel fatigued and some muscle weakness, but no other symptoms. I am very positive, but it sure feels good to hear stories of longevity. I wish you continued healing. I also believe attitude is an integral part to a positive outcome. Judi
Thank you Judi, and I wish you the same. 
Di
Hi Di do you mind if I ask why were you not put on urso for ten years and how are you doing now?
Hi, Littlemo - I'm not sure why, but I am in Australia, so perhaps urso wasn't approved by the Australian government until then - to be honest, I didn't think to ask, I just thought it was a 'new' drug.
How am I doing now: Liver wise I think every thing is okay - my LFTs indicate that that is the case - most levels are just above 'normal'. At the moment I'm having tests to find out the cause of my 'extreme' joint pain (extreme for me anyway - I don't 'do' pain very well lol) - as I said in an earlier post, I think the joint pain (and a couple of other symptoms are linked to new medications) are symptoms of PBC, but, the Doctors want to rule out other possible causes.
Di
Hi Di thanks for reply just wondered as everyone( it seems) on here was started on urso when first diagnosed. I myself am a bit sceptical now about it as, since coming off it I feel much better and the itch that was destroying my quality of life is now much less and much more tolerable. I feel more current research needs to be done into the use of it in pbc patients like ourselves who have been known to have the condition for many years. Just my opinion. Thanks again take care hope you get answers to what is causing you to have the extreme joint pain so you can get appropriate treatment and relief from all the pain. Bfn
Hi, With regard to joint pains, have you been checked for hypothyroidism and Hashimotos? Worth checking, there's a lot of symptom overlap with PBC. Best wishes and thanks for the lemon water suggestion and the positive vibe.
It was so good to hear your positive attitude to PBC. It gives us all hope that we will continue with good health. I will try your advice regarding the warm lemon water and see how it goes. Like you I am trying to be positive about this disease, but although I am 74, I was only diagnosed about six months ago. I had symptoms for a number of years, nausea, itching, tiredness etc. which I put down to the aging process and I didn't visit my doctor. I began taking Urso on diagnosis, and so far I haven't experienced any new symptoms and the itching hasn't got any better or worse. I return to see my consultant in February, so will see if my bloods have changed or not. I have always enjoyed good health, into my seventies so I consider myself very fortunate. Anyone else out there who has been diagnosed as late as myself. Good health to everyone for the New Year.
Hi,
Was priscribed URSO the day I had confirmation of diagnosis. I have no idea if it has anything to do with your blood results though!? I assumed it was just the norm to start patients off on this regardless of blood results. Be interesting to read others experiences.
Mel x
I was prescribed URSO the same day I received my PBC diagnosis - Jan 2011.
ive had pbc for around 20 yrs so the liver doctor said but they only found out what i had 15 yrs ago,, i went on Urso straight away and my bloods are good at every blood test,,, my doctor said if you respond to the urso then you will die of old age and not the pbc,, i really believe she was telling me the truth... i do take 5 Urso a day and i have put weight on which seems impossible to get rid of.....
Hi Bev as you seem to be one of the longest sufferers of pbc on here do you mind if I ask what symptom it was that took you to see dr and end up in your diagnosis. I went because of horrendous itch I also had terrible fatigue and joint pains but was just putting those symptoms down to working full time in a care of the elderly ward. Also when you say your blood readings are good do you mean normal or near normal( mine have never been normal apart from the( bilirubin and albumen which apart from in pregnancy 6 yrs ago were very abnormal), they are usually 3-4 times what they should be despite being on urso for more or less 10, almost 11 yrs, since diagnosis)
I was started on Ursodiol the day the Dr. told me I had the disease. But they then knew, that I had had this disease for 6yrs, before the diagnosis was made. In 1997 a GI dr. did a biopsy, but didn't know what disease it was. In 2003 another biopsy was done and confirmed by the Mayo clinic what it was. I had never heard that the ursodiol will make you gain weight. I have saw elevations of LFTs since 1987 in my labs.
I was actually given the Urso before diagnoses confirmed ~ doc said i will call you asap , he called 2 days later and said fill script and take 1 capsule 3 times a day .
My bloods were sky high and had been for a while, I had an MRI scan during the Xmas period of December 2009, I received a phone call from the Dr's surgery and was told to pick up a prescription as the consultant had sent a message for me to take medication, when I asked what the medication was for they said I had fatty liver, I wrote to the consultant for an explanation, he told me I had PBC and I would need the medication for life(Urso) I have been taking it since Jan 2010, my bloods are now almost normal, as for weight gain, I have lost 3 stone since May 2011, I feel much better, although I still have really bad days when I just want to sleep all the time, mainly I take each day at a time, pace my self, and have a great husband who does the house work and cooking, I just have to get myself ready for work, I have a full time job, although it is sitting in front of a computer all day, some days I'm like a zombie, others I feel fine, weekends are for recuperating from the working week.
Hi, i was started straight away, i take three twice a day
My Gastro/Hep started me on Ursodiol about 6wks after diagnosis. Asked me my weight and prescribed 3capsules/day. That was 5yrs ago.
i was prescribed day of diagnosis im a pain for tablets so im on the solution form and have to have 3 spoonfuls a day
I was taking urso from diagnosis (11yrs ago) up until 6 months ago when my itch came back again.
My LFT's have never normalised .. when i started itching again, I was seen by the team from Bimingham liver unit and they advised my consultant to take me off Urso and reintroduce it later. The itch has gone again now and I am due to restart urso soon again, so i will see what happens.
urso is prescribed on weight.... those who are heavy on a small dose should ask there doctor to look at their dose and those who are very slim on a big dose should ensure they are not taking too much, I lost 4 stone at one point and didnt have my doseage altered but I found i was have more diarrhoea until the doseage was altered.
Hi again just wondering,( as I too have just come off the urso) y are drs puttting you back on it and also have you always had a problem with the itch?
Hi I've had urso since diagnosis 14 yrs ago, my lft s are stable x
hi !! been on urso since my diagnosis in 2002!feeling ok ,still working, my LFT are stable, still itching once in a while [at nite] Im positive,take care of myself,trust my specialist,and hardly ever think about this strange condition!! glad i found this site! im in the us take care everybody and stay positive
Hi,
I was diagnosed 2 yrs ago and have not been prescribed Urso as yet. I am in the US and the diagnosis was made during routine blood tests. I have very few symptoms, perhaps that is why.
Judy
I went about twenty years before being put on Urso. I had been to Mayo and the doctor recommended I be put on a trial of Urso but my regular doctor never bothered to do so because I didn't have the AntiMitochondial antibody that 95 % of PBCers have. So, ten more years went by without taking anything until I started feeling a pain on my right side of my liver. I asked to go back to Mayo and my regular doctor would not give me a referral, saying it was too expensive and, besides, there wasn't anything they could do to help anyway. I went without her referral, the Mayo doctor put me on Urso and, after twenty years of high liver profiles, my labs went back to normal. It's still normal after 4 years of taking Urso. It wasn't until I had this response to Urso that I was diagnosed with PBC. Only people with PBC respond to Urso with their liver profiles returning to normal... is my understanding.
I was started on Meds immediately .
Hi Dinnyd! I am also from the U.S. I was diagnosed from blood tests as I have no other symptoms. Good luck.
I was started on Ursodiol as soon as I was diagnosed, but I had had a liver biopsy 5 years prior to that,..... without getting diagnosed. The Dr. was unsure what it was. And 4 years prior to that, elevations was showing in my lab work. So I went maybe 9 or 10 years without any treatment. I have now taken Ursodiol for 11 years.
Hello Karenlesley I was diagnosed nearly 12 years ago I was put straight onto the urso and calcium chewable d3 tablets . I also now take a statin to reduce the cholesterol levels. I was given a liver biopsy to confirm the PBC. I see the liver specialist 6/12 months get my bloods done at the doctors clinic 3 monthly normally and results sent to the diabetic and liver consultant and they advice my doctor.
Still waiting for date for tribunal! Seeing some people have won (so pleased for them) can anyone give me help on how tthey did it please.
