Diag two weeks ago am 30 :-( Start Urso 2mro, so down and tired , the specialist said he does not need to see me for 6-12mths is this right?

I have so many questions i wanted to ask the doctor when i made my appointment and she could not answer hardly any of them, came out feeling so disheartened. I am not really coping all that well with this am being told to carry on as normal i know its early days and am still a shock but am scared. I was such a party girl before really feel like i have lost a part of me. I miss organising girlie nights and having a drink i have been told i can drink but obviously in moderation. I start my urso 2mro and really hope i dont get any side effects i am starting on 250 mg 3 times a day. Do you have it at certain times and with food? xSorry to go on xx Appreciate every reply xx

61 Replies

  • I was diagnosed in may I've been to the liver specialists three times now next apt 6 weeks time.. And been to same hospital for liver biopsy and scans.. I'm 34. My lfts where more than ⁴ times the norm tho.. Like alk phosphate was 1075 in may.. Should be around 200.. So without knowing what your levels are? I would have thought they'd want to see you in 6-8 weeks to see if urso working

  • Hiya, Thank u for your reply. I have contacted my specialist or the secretary! and they have changed me over to another specialist and have asked if i have any concerns to put it in writing and he will write back....so i will do that. I thought i just get a check/blood test every 4 weeks in the first 3 months on urso?? I will find my levels and let you know i dont know them of by heart i know i should.. x

  • I am the same as you party central.. I'm Irish lol.. That was one of the biggest things for Me too... :-( you know what though I've started to appreciate and value life more.. I still have three to four drinks on night out.. Don't know how that will affect the tests we will see when I next get blood results..

  • This made me laugh, i am like you i just love to party and that doesnt mean i like to get extremely drunk i just like a drink with the girls on a sat night after a hard week at work and let my hair down. I will be having the odd drink on nights out as i have been told this is fine. I have no big nights in my diary as yet which is good as want to learn more about this first. Thank u for your reply xx Ps no not skinny at all i like to call it hour glass haha x I have have had just two tablets so far just keeping fingers and toes crossed i get no side effects, as apart from a bad back which i have had years i have no symptoms xx

  • I take 900mg (weight determined so I guess you're a skinny mini ;-)) all at night before bed with a snack no side affects. Maybe heartburn a little. And if get up in middle of night slightly nauseous but that's it.. The itch stopped when started taking and lfts improved dramatically..

  • Hi donna,i was diagnosed in may.didn,tsink in for a while.then when it hit,i had a cry an decided lifes to short an ?it,jus get on with it the best i can .im 54so no partyin.loved hiking with my beardie an anything countryside.fresh air freek.

    I allso have bad ostio now amoungst other complaints.so my lifes had to change a lot,but decided to make the best of what i can still do.when i tell prople i have pbc the first thing thy say.is,julie i didnt know you drank.phew .jus chuckle an get on with life.i allso have bouts of tiredness an itchies,whitch can drive me nuts on occasions,i see my liver specialist in november,ive written down the questions i,d like answers to as when in there i seem to forget half of them,and my doctor didn't even seem to know what pbc was .my motto is live life the best you can and don't ever stop doing the things you enjoy unless you really have to,all the best donna x

  • Hello, Countryside walks you just cant beat it i go every night with my parson russell terrier and she defo keeps my spirits up what a little character. Fresh air you cant beat it! I have listed to so much good advice and today i woke up a different person thinking alot more positive. Loads of people have told me i could get run over by a bus 2mro so why waste time worrying (I dont know what they are trying to tell me i avoid all busy roads at the moment haha) I at the moment do not have any symptoms i may have lived with this for years i just dont know. I only went in because i found a small lump on my neck. 12 blood tests later, ultrasounds blah blah blah this was the end result so what a shocker. But in the same boat as everyone else. I will listen and honestly take on board your comments and live life to the full thank you and all the best to you too xx

  • I have had pbc for 12 years and am now stage 4. If you doc doesn't want to see you for 6 to 12 months then it probably isn't necessary. If you have lots of unanswered questions call the PBC foundation and speak to one of their volunteers. That what I did and then you don't feel so alone.

    Jpmac, I don't know how you manage so much drink but I would cut back as it will affect your levels.

  • Yeah i know but 2 weeks ago was the first i heard of this and have had not other contact since i did not ask any of the correct questions i should have because i was in shock. I have been told to write a letter which i am in the process of doing. I will book another appointment but also take your advice and speak to the foundation. As for the alcohol i think it must be different in each case alot of people have said it hasnt affected there reults where others say stay of it. Thanks for your reply x

  • I also have pbc I have had this for 10 years and told you can live for years with this. this is not a death sentence. You are not on your own there is loads of people with this and some don't know they have this. I had a blood test for other things and they found I had pbc. We all panic at first then you ajust to it. there is all different symptoms you don't all get the same mine is a dry mouth so I chew gum this helps me. hope this helps.x

  • Hello, Yes i know i am not alone this site is amazing and i have had nothing but positive reasons to live a happy life. I woke up a different person this morning. I hope it lasts. Many people live way into there old age and simply end up dying of old age or something unrelated to PBC so that is positive also. Having watched the dvd from liver north the consultant on there is so positive and the very last resort if it ever comes to it is a transplant. I am hoping with all the new stem cell research this may not even be the case in years to come.I have no symptoms as yet i hope they never come but if they do i will deal with it. I hope this new attitude i have continues i have you guys with your positive words to thank for that xx

  • Hi donna30

    I'm 29 and I was told I had PBC in february and I feel exactly the same as you, I've been told to just live a normal life and don't worry about making life changes. At first I was really worried and I thought right I gunna change everything but as time has gone on I've just learnt to except it, I feel normal, I look normal and I'm just going to live my life normal. I'm a bit of a party girl and I still go out and drink just now I don't just drink for no reason, for example I won't just drink in the house with a meal I'll only drink If i'm going om a night out. I refuse to take urso until I start to get symptoms, for now I've just started to eat my healthy and I take vitamins.

  • Hiya Gemma01.

    Good to read your comment above. That is the fact that for now you are holding off taking the urso due to being asymptomatic. I believe myself that I would have more than likely done the same as you if I'd have been informed I had PBC by accident. Mine was due to fatigue and itching, of which I only now have the latter.

    Altho' it is personal, due to urso being something of a mystery with regards to PBC, some people do not take it regardless. After all there is no guarantee if you do or don't take the urso really if you are what is known as early stage PBC.

    My puzzle is that if my LFTs go to a continued certain level (they have done a bit of up (not drastically) and down (can be drastic) for the last 2yrs now, been on urso nearly 3yrs), then I think it is probable that I could continue taking the urso and it not making any difference but I'd not know as I was continuously taking it. If that makes sense? I know I see urso as a supplement it being a bile component but I can't help wondering long-term.

  • Hey hun, we sound very alike :-) i have been so positive today then read things others are going through at such a young age and am worrying again. I need to learn that everyone is different i suppose. How did you deal with things at the beginning? How often do you see your specialist? I have no symptoms but have started urso today arghh Thank u so much for your reply xx

  • Thats ok, I do that all the time I read things and worry but now I just think about myself and how I feel because like you said everyone is different. You just have to take things as they come, I do get bad days but now i'm just gunna think well I feel well so i'll just live my life like a normal 29 year old. Things could be worse and we could be living with something that might prevent us from living a normal life. I did feel at first like the doctors didn't care but now i've just realised that by them saying carry on as normal must be a good thing. I only found out I had PBC because I went to the doctors with raynauds and they tested my blood this is the only symptom I have. I seen my consultant last month and he tested my blood, there were no real changes to them and I have to have them repeated in november. Everything with be ok though I understand you worrying because I do but you just have to live your life, your still young so do the things you enjoy. How did you find out about your condition? Xx

  • I think i read too much at times and scare myself, but i think we all must do it. I like you just need to get on with life stuck in such a rut at the moment i need to just get on with it. I actually only found out as i had blood test as i found a small lump on my neck if i hadnt have gone to the docs about that i will never i have known about it. Many people dont find out while quite later in life by the sounds of it. Thank u for keeping me positive dfont actually know what i would do without this support group. I hope you have a great weekend xxx

  • I do aswell, my fiance has been great support and thats stopped me from reading as much because he says it seems to make me worse so i just tried to stop now. Thats mad how they discovered your PBC, so was there anything abnormal about the lunp or not? My doctor said that you could be really old by the time you see any symptoms so that good, I would hate that tiredness people are talking about i'm always on the go and I like to be doing something. Any plans for the weekend? Xx

  • I know hun been a mental few years really year before i found a large lump in my breast but luckily it was benign, the lump in my neck i have been told to ignore!! i was having an operation to remove my breast lump then all this happened and they cancelled it until they found a reason why my blood levels were not right. Will be glad when its out to be honest its another thing on my mind. Thats great that your fiance is so supportive its such a great help. I am not looking forward to the symptoms either hope they stay away for you too. This weekend i am going to chill go on nice walks with my dog and other half, maybe have a bit of retail therepy, takeaway and x-factor haha and hopefully catch up on the 2 weeks sleep i have missed with worry lol I am out next weekend with the girls so looking forward to finally getting my glad rags on and having a bit of fun. Just booked to stay in ireland with the girls too so looking forward to that. Hope you are ok? Have you got much planned over the weekend? Hope you have a great one xx

  • Ahh weekend sounds perfect hun, all the things I love. We live in london but i'm from wales so we're in wales at the moment visiting family, we have a little dog to hes a pug. Just going to chill and watch xfactor to and have a curry tonight. Thats sad about the lump in your breast bet you were so worried. Hopefully it won't be long and you can have it out. Have they mentioned you having a liver biopsy? Xx

  • I love pugs they are adorable :-) Hope you are having a lovely time visiting your family enjoy your curry night my fav! I am from Yorkshire so miles away from you but glad we are in contact we sound so alike. They have not mentioned a biopsy as yet did you have one? I wrote to my specialist yesterday as they do no want to see me till may so i just wrote down my concerns so hopefully i will get some answers then. Have fun this weekend hunxx

  • Hi,i can totally relate to what your saying,as i came out my consultants app disheartened and very fed up, as i felt it was a case of take the pills and get on with it.she didnt like me questioning it.I have to have intial blood test then start the udca then repeat blood test and see consultant again in three months.I found the best help and understanding was the PBC foundation, who sent me loads of useful info and were very helpful on the phone.Each person is different in relation to understanding and accepting you have PBC, and you will go through a roller coaster of emotions, but your deal with it in your own way.If you have a supportive G.P it helps.well listen to your body, rest up when you need to and live life to the full when you can.I wish you well :)

  • My GP did not really have a clue about it she just said how sorry she was and how rare it was i came out thinking terribly. I arnt going to lie i was so positive earlier today and just getting on with things then just read a message on her and i am at an all time low. I really just need to think we are all different i suppose. I am going to contact the foundation 2mro and ask them a couple of questions too. My emotions are all over the place a couple of hours ago i was out enjoying having a meal with my mum now am angry and sad arghh just hate this feeling. I will have to just come to terms with it in my own way like you said. Thank u so much for replying means alot xx

  • Donna I know what you mean I think you go through the range of emotions... Denial acceptance etc etc.. Try not to read too much bad stuff (i did and was a wreck).. I just live my live now like a moderate version of me.. Who still let's her hair down once in a while to maintain my sanity x

  • Yes that is my problem i am reading too much and the bad stuff is just too scary, all my friends and family are telling me not too as well so i must just try stay positive. I feel like a part of me has gone and i need to gradually get that back. I will live my life one day at a time and am sure i will get stronger. I will have to let my hair down too from time to time if not i will go stir crazy i totally know what you mean there xx Thanks for taking the time to reply xx

  • Hi Donna. I was diagnosed 2 months ago and I know just how you are feeling. It is frightening but I have always been a positive person so after a good cry, I decided that I had to get on with life, although making some changes along the way. I have taken a break from the parties at the moment, until my blood tests improve anyway. I have also stopped my aerobics/dance classes and not drinking any alchohol. No side effects at the moment with Urso. I am taking 450 mg, twice a day and was recommended to take with my food. I am also taking vitamins & minerals for my liver and am on a gluten free & soya milk diet. Feeling so much better. I have my blood tests tomorrow & will be seeing the specialist next week. I am hoping that my blood tests have improved so that I go out celebrating with friends although I will be on orange juice! Keep positive Donna because life is to enjoy! Take care.

  • I am going to do the same i am going to try and relax get my diet in tip top shape and try overcome all these emotions. Like so many people have said it is not a death sent=ence it just feels it at the mo. Had a full day on urso and hope that goes ok so glad it is going ok for you too x Please let me know how you get on with your blood tests will be thinking of you and good luck xx

  • Hi Snowqueen, just a quick question, What vitamins and minerals do you take also do you take milk thistle? Wil you let me know what your specialist says xx Hope you are ok thank you in advance

  • I have 4 urs a day in the morning after breakfast they increased these some time ago they are trying to find out why we get this.do you have 6 monthly blood test and rmi scan I have this and you can ask the specialist all your questions. this is not a death sentence stop getting yourself upset you are not alone hope this helps x

  • Thank you this is what i need to here i tend to look at the negatives rather than the positives thats maybe as i have only known such a short time. The amount of research that is being done especially with stem cells is marvelous so thats all positive. I need to sort out my appointments as i dont know where i stand with anything just got my prescription and was told i had it two weeks ago i know nothing else other than what i learn on her. Thank u anyway x

  • Hiya Donna.

    I think the urso when first prescribed is a case of going off what a doctor might say to you. I was originally going to be prescribed 4 x 150mgs per day as I take 600mgs. I said there was no way I was going to be taking 4 tablets 4 times so he gave me 2 x 300mgs. There seems a bit of a debate when is the best time to take the urso. I originally took one with breakfast and then one around 9p.m. at night, several hours after the evening meal. Altho' I started to get good LFTs that started only 6wks later with the tablets, I did get initial side-effects like bloating and heartburn.

    I started to wonder if heartburn was due to having the final tablet around 9p.m. with just a dry biscuit and drink as it is a form of (bile)acid. So I decided to take the final tablet with the evening meal. My side-effects did start to subside within a 3 month period and I don't really have any now. I never had a problem tho' with constipation but have had that at intervals since the urso so I think it is that. Some suffer diarrhoea.

    I can't say what might be best for you but maybe to start might be best breakfast, lunch and evening meal perhaps? I think myself a bit of a build up of getting used to urso is better than taking all at once but I have read with regards to urso that it tends to be started at intervals with the tablets daily and then you can take the whole lot when you want or feel is right later on if you are doing fine.

    I've experimented with mine in the last few yrs. I have found for me seems to work best breakfast a tablet and then evening meal but that's me.

    Perhaps with taking 3 tablets, you could take one at a certain time in day and then the final two together at another time in the day thus not having to take the tablets in a 3 interval period.

    Now some might disagree but when I had my first abnormal LFT I didn't have another alcoholic drink. I was never one for going out much prior to children in the 1980s and after they were here my husband and I just never bothered anyway. So I do not miss that.

    I do think that at the start of taking urso in order for the LFTs to have a good chance of starting to come down, it would probably be a wise thing not to have any alcohol or if you must just a glass say once a week. I think if you do have several glasses of alcohol a week, it may just be a case of the LFTs so-to-speak start pulling against each other so you won't get a true reading?

    Also by doing this when you receive your first LFTs on urso, you will start to feel that much better if you see numbers coming down.

    I reckon as you are asymtpomatic at present unlike I was back in 2010 at diagnose, then it does sound like it is perfectly normal for you not to return to the hospital for between 6 and 12mths. I went back 6mths after my first LFT blood test. I'm sure your GP will be taking note of the LFTs as they can read blood work altho' he/she may not be overly-familiar with a patient having PBC so if there are any concerns, expect he/she will let you know and then perhaps suggest a return visit to the hospital. I somehow think you will probably be fine in the interim period.

    Unfortunately as I have found over the last 3yrs almost since I was diagnosed, you do not start to feel your old self for some time. You've got the shock of having PBC to digest and then getting used to taking the urso and then there are the LFTs to take in each check but slowly you might start to just find this PBC thing one big irritation like I do. I have the good days where I'm full of the joys of spring and then the notso good days following a restless night due to the itch so feel drained for part of the following day.

  • Hi, I dont know whether my message got to you in the inbox. Was feeling much more positive but its hit me again after reading some of the messages. I tend to look at the negatives rather than the positives which i need to stop doing. I have taken my urso at 9am, 1pm and 6pm feel ok if not itchy but i reckon this may be all in my head. I am going to sort my diet out and get in touch with the foundation and go from there thank u once again i will keep you posted on how i get on with urso. Appreciate all your time xx

  • I have always since dx. With PBC took 3 x 300mg a day. I take them in intervals m, n, and n. I must say when I get bloat it is right after lunch if I had gluten. If I take my URSO it helps the bloat. I do wish the brain fog would go away. This is worse when I am tired. My itch is worse in the evening. I changed specialist at this point and he wants to see me in 3 months He said he is not as worried about the PBC as much as osteoperosis getting me first. I suffer all the time with neck pain. One day at a time. Good days makes the most of it.

  • I have brain fog too its awful isnt it, i can barely string a sentence together at the moment but i think that is just stress related. I want to check my vitamin levels etc as i have always had a bad back gonna take each day as it comes thank u xx

  • Hi

    Sorry to hear how worried you are..my story maybe to help..... I was diagnosed in 1985! And still have elevated lfts....but nothing much else......I forgot about it when I heard as I was so busy.....I think about it now as I have to have painkiller for another condition. I never took urso.... as at that time it was very new...I never accepted a biopsy as it didn't change the outlook, I just live with it..so please remember that many people have this and lead a full life. I don't drink much so I am OK on that..it is the only timeI feel my liver is bad when I drink more....but apart from that I live OK..I am 63 now so have had it for many years. As my consultant said, sometimes it never gets past the first stage.....

    Have fun,

  • What a lovely and positive message thank you so much for taking the time to contact me. I have decided to stay of the drink just to see what my blood tests come back like, i am eating alot healthier too but need to sort my diet out once and for all. May i wish you all the best and i hope there are many people who never get past the first stage. Thank u xx

  • Find a sympathetic GP. If they don't know much about PBC then tell them. I have found that we know more about it then they do. Most are open to information. If your GP is not interested, then change. Never be afraid to ask questions after all it is your body and you are entitled to be treated correctly.

  • Yes i will do i have a list of questions i need to ask thank u for your time hope you are ok x

  • Hiya Donna30,

    I feel for you as I was devastated and thought my world was over and that everything that I lived for had been taken away from me in an instant. I have been diagnosed for 6 years now and I am still in denial and I don't think I will ever accept my condition as I am such an active, positive and optimistic person. I, too was also told that I could carry on drinking alcohol in moderation and too my shock and horror after last Christmas my levels went crazy and come Easter I was informed that I had end stage 3 Liver disease and 3 weeks ago added my name to the National Organ transplant list. What an achievement at the age of 41 years, never in my worst nightmares did I think that I would be in this position ever in my life. I've got 3 children, 14,13 and 2 years and worry that I will not see them grow up and be a part of their adult lives. I had so many hopes and aspirations that are now just faded dreams.

    Oh well, back to reality, life is just a rehearsal for the real thing, whatever that may be and we must all enjoy and treasure each day at a time xXx

    email: ckevat@gmail.com and we can chat some more :-)

  • Whoa!!! Good luck what an achievement , you are very right we live each day as it comes. Xxx

  • Hi, thanks for your story. It is so much easier said than done but you must stay positive. It must be so scary for you i have only just been told so cant really imagine what you are going through but it does not mean you are going to die there are people on here who are living to a ripe old age even with a transplant. Enjoy each and every moment am thinking of you please keep me posted. I think you are right enjoy every day take care and please keep us informed. Wishing u well xxx

  • Hi....a transplant will save your life...thank goodness you are on a list...it is the best thing....keep positive, and know that you will definitely see your children grow up and their children too.....,

  • Hi have been there 1 year now so do not loose courage read as much as you can everyone is different , what are your symptoms and how was that they made the diagnosis? . Change your diet and I think it will help to educate your family a little bit for support . I started milk thistle very day and omega 3 capsules help with tiredness and itching so good luck you will be fine xx

  • Thank you for your message it means alot, you sound so positive it is lovely to hear. I have no symptoms i went to the docs as i found a small lump on my neck so had a blood test and that came back abnormal then 12 tests later this has been diagnosed. Sometimes just wish i had never been to docs about that lump. I wanted to start milk thistle as heard so much good about it. Also omega 3 i will consider too. Good luck to you too and thank u so much xx

  • Hi Donna i am glad that you found the dvd helpful.I know i have said this before but please don't worry too much,i spoke on the phone today with an amazing lady who has had pbc for a very long time and works closely with some of the best consultants in pbc,like she said today if we are to have liver disease this is the best one out of the lot as it is such a slow progressing disease and there is so much research going on at the moment.There is only 5 percent of us that ever need a transplant,when you think of how many of us have pbc this is a very small percentage of people and most of them people were probably further on in the disease when diagnosed.I will never forget when i was first diagnosed i spent the whole day on the phone ringing other people up who had pbc,i talked to alot of people,at the time i couldn't understand why they were so calm about it all,they were all leading very normal and happy lifes,dont get me wrong they had there ups and downs with the symptoms but all the people i spoke to had lived with pbc for very long time and had never progressed with the disease.I lived in this bubble for about 6 months.I wouldn't say i'm lucky to have pbc but i feel very lucky to have been diagnosed as now because of urso my lfts are all back to normal and may stay like that for the rest of my life.for me the worse part of the disease is the symptoms i have bad fatigue and bad joint and muscle pains it is a strange disease as like my self the liver is looking good and lfts are normall but you can have these horrible symptoms.What i dont understand is why people with no symptoms choose not to take urso,i spoke to a lady last yr who was in stage 4 and had no symptoms at all,not all of us get symptoms but that is no guide to how the liver is coping.Good luck with the doctors i hope you find the next doctor more helpful.

  • Urso only prolongs pbc by a year or two so some people decide it is not for them or cannot stomach it....I decided that this drug was not for me yet.

  • Really, where does it say this? I need to read up on this? x

  • I have been taking urso for the past 5 years and my LFT's have remained stable so it certainly does work.

  • Thank you for this x

  • Hi oscardog. I have been on urso for 7 years and my LFT's are still stable. It certainly helps with any symptoms.

  • Really...? I've never been told that now I'm panicking

  • Morning, Lainey67 i love your messages you always have such positive things to say i thank u so much for your reply they keep me strong. I am sorry about your symptoms and how you must suffer with them i wish there were treatments for these too. I have no symptoms as yet i am on day 2 of taking urso i am just hoping i stay ok. I will come to terms with it i am sure the worse thing i find is waking up on a morning happy then it hits me and i just feel sick with nerves. I will get through this, everyone on this site is great support. I hope i can help people in the future as much as you are helping me xx

  • Hi Donna, I saw my specialist on New Years Eve , I started 900mg of URSO the same day, it was a bit daunting knowing I had to take this for the rest of my life but I have to say I have had no side effects. I see my specialist every 3 months and my blood results have improved. You will get used to this, it is early days yet, I felt like a truck had hit me when I was first diagnosed, but you do start to come to terms with it. I am having my gallbladder removed on Monday (I have multiple polyps in it, the largest being 1cm) a bit nervous and scared at the minute.

  • Yes i feel like a truck has hit me most mornings, i hate waking up happy and worry free then realising i have this not a nice feeling as i am sure everyone has felt. I am on 750 for the whole day. I take 250mg morning, lunch and 6 ish. So far no side effects touch wood. I will come to terms with it i am normally such a strong character but this has knocked me off my feet. All these messages are making me stronger though. I will be thinking of you monday i hope your operation goes ok please let me know, thank you for your message xx

  • Sorry Donna, just to add, I take my urso in 1 dose with my evening meal on the advice of my consultant, no problems. You will work out what is right for you. Take carex

  • Hi Donna i don't seem to be able to send a private message i don't know what i'm doing wrong,i wanted to know if you would like my phone no as it may help to have a chat,talking on the phone to others is what got me through my first few weeks after diagnoses.

  • Hi again Donna i have managed to send you my no in a message let me know if you recieve it

  • Yes i received your message thank you very much i will try call in the next few days it is very much appreciated xx Hope you have a lovely weekend xx

  • Hi Donna i am glad that you got my message ring any time i'm in all weekend if you need to ring xx

  • Thank you so much i will call you over the weekend i would imagine xx

  • Sadly I think that most of the doctors appear to come across as they either just shrug you off and say 'get on with it' and to keep on taking the pills, 'I'll see you again...' I do think it is partly that once it has been established you have PBC then at present it is known there is little that can be done about it as there is no cure as yet.

    I do think that my last GP surgery, the doctor I was registered under I was the unfortunate one that he started checking the blood results when I went in for them at intervals. He did come across that he wasn't so bothered and he couldn't see why I wanted a copy of the print-out of them. I did end up saying why - I think with this PBC unless you see the results whether better or slightly worse than previous set of LFTs then you don't seem to fully comprehend how you think you feel (I've found times I've felt great the results haven't shown up better than the last one and vice-versa) - and then he told me to ask one of his admin staff to print off, wasn't for doing that there and then whilst I was seeing in him an appt in surgery. I even had the Practice Manager ringing me once, asking what I was doing with the results! I think had she have taken time to read a bit about what PBC was before she rang then it would have been a lot less hassle at the time. I did have more problems with the admin staff with regards to the LFT print-outs each time.

    I did switch surgeries earlier this yr., thought in June when I had blood repeats and got a new script for 90 days of urso, that the new GP plan of me going in to surgery mths now for bloods and to see a GP looked like I was getting somewhere after almost 3yrs. Then when I re-ordered the next urso script early Sept, was asked by another GP in surgery why I have been getting 90 days so now I have no repeat prescription currently and shall have to go in to see the GP early Dec to sort out as he said he'd do a one-off of 3 months but their month is 28 days so I have 84 days tablets. For me it has been all these inconveniences and no matter how I try to save an appt for someone else more needy, I have on occasional had cause to go in and see the GP as I got absolutely nowhere over the phone or calling in to speak to reception.

  • Hi Donna30

    It is quite normal for the specialist to see you every 6 or 12 months. I have 6 monthly blood tests to see how things are doing. I started on Urso 3 times daily and have now been told I can take them all in one go at night which saves a lot of hassle. It is a shock when you are first told but I contacted the PBC Foundation via the internet and they are fantastic with a regular magazine with lots of info. You then do not feel alone with this. Do not give up your girlie nights just drink diet coke!! enjoy life. x hug

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