I have just been diagnosed with pbc I'm having 750mgs of urso daily I feel very unwell have bad night sweats n have constant diarrhoea

[sophie666]

I dont know what stage im at does anyone know

[Calogia]

Sophie - there is no way to know what stage you're at without a biopsy. I had one two years ago and was diagnosed at stage 4. 1500 mg. of Urso. Since you are at half that you may be in the early stages.

[pomice in reply to Calogia]

Urso is given according to your weight, not the stage of disease

[Calogia in reply to pomice]

That's true...but when my numbers started going up again they went from 1000 mg. to 1500 mg.

[pomice in reply to Calogia]

Did your numbers go up significantly? Mine went up for the first time in 4 years, but the doc said not by much so no worries. I take 1500 mg a day one in the AM and 2 after dinner.

[Calogia in reply to pomice]

Pomice - Do you know what stage you're in? I don't know anyone else in stage 4. I am the only patient my GI has with stage 4. I worry all the time.

[pomice in reply to Calogia]

I am sorry that you are worried as this is understandable. Are you having any symptoms of this disease? I have had diagnosis for 4 years and thankfully no symptoms. I do experience "different' bowel habits than I have previously, and I get discomfort (more than pain) in the upper right liver area sometimes but that is all. I hope you can find support from this sight and also the liver foundation. There are new meds and trials going on so use "google" and check out what you can. All the best.

[Calogia in reply to pomice]

Thanks i appreciate the support!!

[sophie666]

The specialist told me he doesn't want to do a biopsy as it carries risks but I've had a ct scan and I was allergic to the contrast n he says I have to have blood test to see if tablets are working thank you for your reply xx

[Calogia]

I can't understand that. They did mine under a local and they told me to have it right away so they could see what stage it is in. Unless you have underlying medical conditions that might make a biopsy difficult I would ask again.

[Hidden in reply to Calogia]

I think it all depends on which country you are in. I suspect that sophie666 may be in the UK and if so biopsies do not tend to be done unless there is any doubt as to diagnosis to give. I got my diagnosis as everyone probably knows by now (as we do tend to repeat ourselves) due to an high titre of the AMAs, itching and fatigue and abnormal and elevating LFTs and GGT. Yes a biopsy does tend to be done under local anaesthetic (though can be done using the ERCP, the camera) but it can carry risks of bleeding and also some patients do not have the normal blood clotting so would be more at risk. It is pretty invasive too as in my opinion a liver that is struggling at the time then has to heal itself of a puncture. I know I'd not consent to one now. I am confident ultrasound scans can pick up things well and also with bloods pretty accurate.

[sophie666]

My specialist doesn't tell me much but I will ask when I see him a couple of weeks I have been seeing him for the past 6 months n have just been diagnosed with pbc he doesn't seem all that concerned x

[Hidden in reply to sophie666]

Hello again sophie666.

If your specialist isn't concerned about taking a biopsy then in my opinion I'd not bother thinking about it. If you really want a bigger picture of PBC then a biopsy can tell a doctor but the one thing that does not make me all for a biopsy is the fact that though it can give a PBC diagnosis, the area of liver that is used might be in a worse state than another or vice-versa. Not all the liver can be damaged unless of course one is with cirrhosis I expect. PBC is apparently present in all the liver as I understand it but damage not so.

Jot your questions down what you want to ask the specialist when you see him and put the most important to you at the top. I did this on my first visit even though I wasn't diagnosed. Also I know in my case I rang the consultant's secretary when the bloods came back on my 2nd visit after PBC diagnosis as the consultant sent me a letter stating the LFTs and GGT were 'much better' (to me that didn't mean a thing really!). The secretary said she'd post the results out to me which she did. But you can ask your GP surgery for a print-out of the bloods you know. I do all the time. I don't get hung up about them, just think it is better to know as then I can see and I know myself that doctors can make mistakes.

I started asking for mine due to the fact I was informed my Vit D level was 'not too bad' back in 2010 and my GP wanted me to take supplements, the consultant when I saw him disagreed. I asked for the actual result and found out that my Vit D was on the line so technically it was pretty good.

[GrittyReads]

Hi Sophie,

Try not to worry, if he doesn't seem too concerned it's probably very early stage. What blood tests did you have and did he tell you the results? Why not join the PBC foundation, and have a chat to their advisors. Also have a bit of a browse on here - don't get worried about some of the more quirky versions of PBC that some of us have - and work out some questions to ask him next time. He should be answering your questions, and giving you all your results. I imagine they'll do more blood tests soon to see if the Urso is helping. Meanwhile, see you GP as you should not have to suffer the sweats and diarrhoea - did they give you any dietary advice?

Take care and try to calm any stress, be good to yourself.

[sophie666]

Thanks how do I join pbc site you said to go on to ask advisors plz . Ime having liver blood tests and ama tests tomorrow he told me not to have salt n eat what agrees with me but doesn't really answer my questions x

[GrittyReads in reply to sophie666]

Hi again sophie666,

This site is organised by the PBC F. If you scroll to the top of the page and click on the purple bar, where it says 'About Us' that will lead you to another page with link. Once you get on the main PBC Foundation website, there will be info on joining and talking to advisors.

So, are these repeat tests to see how/if the level has changed?

If the consultant (or your GP for that matter) is not answering your questions, then I would take someone with you. Write any questions down, then if you forget anything your friend/partner/who ever can pick up on it.

You want a good relationship with the consultants etc, but they should be keeping you informed and making sure that you understand.

Stay calm and, again try not to worry. Have a good night's sleep.

PS Where are you based~? Someone else on here may know which consultants work on PBC in your area. I'm in Devon and I'm hoping to see someone outside my area, but I don't know if the 'Choose and Book' (or whatever) system allows it.

[By the way, if you click on the 'reply to this' box at the base of someone's message to you, then when you contact them they get an email. Otherwise they won't know you've got back to them and may not look at today's questions again.]

[h66black in reply to GrittyReads]

Hi. Just read your from Devon me too. Was diagnosed valentines day, lovely present. Still waiting to see consultant at Derriford but no date yet. I am a bit in the dark but keep reading on here for advice. Feel good ish sometimes then pretty lousy other times. I have not been told any results yet but doctors have been bit of a joke. I'm on Urso 1000mg daily plus other stuff. It's just nice to know your not alone! Sorry for writing direct hope you don't mind but why do you want to see someone out of Devon?

[Hidden in reply to h66black]

Hello h66black.

Check out my posting on here,I've posted 2 links that you might be interested in.

Can sympathise by your mention of doctors, mine are not very good either! I thought from start to finish (going to see GP to diagnosis that is) was rather slow. I started itching early 2010 and went to see GP March 2010. It took my GP until August to decide to send me to the hospital as he said he had exhausted blood tests. Meanwhile I was contiuing to itch badly and also my LFTs were rising dramatically (I noticed when I got the print out of them all end 2010). From the GP referring me to the hospital for the first consultant appt it took 13wks. I then had a further 5wks to wait for the results of the AMAs. I think I could have been diagnosed a lot sooner had the system not been too slow.

The consultant informed the GP to tell me I'd PBC and to prescribe urso. The GP then wrote on the consultant's letter to the receptionist 'Pt to see me', no urgency whatsoever. Left to the receptionist I would have had another week to wait for the appt she was giving me. I had foresight to ask her what medication the GP was going to give me and when she said ursodeoxycholic acid I knew it was to be PBC so thought sooner the better. My husband grabbed the phone and informed the receptionist that the medication seemed to indicate something that would not wait a week with a full weekend ahead to worry. I got an appt within the hour of calling.

My GPs have never been forward in blood results, always get. 'bit better', 'bit worse' (than last time) so I requested print outs since diagnosis. Sometimes I have a tussle to get them but get them I do. Do you know, I get more stressed out come repeat bloods and getting the results than any other time. I even had a new GP in surgery ring me last Oct with my results and she was saying how abnormal the LFTs were and was concerned. She wasn't even aware that I had PBC! The few figures she read out I told her they were far better than what they had been, I had all the results from 2010 in front of me unlike herself who confessed she only had those and the previous ones to compare with! Little wonder I request a print out!

[GrittyReads in reply to h66black]

Hi Sorry h66black,

I just tried to reply with a long explanation to the email I'd had from you, and it all disappeared. Seems like they've changed the logging-in protocol. I have to work right now, will try to get back to you later today. If you want to email me off the site, it can be done, I'm just not sure how. Quickly, I want to see one of the real PBC 'leaders' as my case is a bit odd and I don't actually think I've got PBC - or at least not yet.

[Hidden in reply to GrittyReads]

From my experience of Choose & Book (for ENT - 2012 and 2013), you don't actually k.now which consultant you are going to be seeing. You just get to choose the venue if there are choices (I had to complain during 2013 as I didn't get any options of place nor time, the GP secretary took it upon herself to book it for me! I then had to wait for another letter from surgery so I could choose and do my own online). You then receive a letter stating the doctor you are going to be seeing (or in my case, the odd time it is his/her sidekick).

My first hospital appt I had for elevating LFTs was made by my GP and I got the letter direct from the hospital Hepatology Dept.

[Hidden in reply to sophie666]

Also to add to GrittyReads sophie666. You can also contact LiverNorth. I'll paste their web link on here. If you click on Publications you can request a free dvd from them all about PBC. I got mine about 2yrs ago now. Their newsletters are online which you can also read. I do. I have emailed LiverNorth previously, did get a reply from a lady called Tilly who herself has PBC.

livernorth.org.uk/pages/fac...

Also as I recall there is a diet sheet on the British Liver Trust website for anyone with a liver condition that might be of help. (I'm not exactly a fan of the Brit Liver Trust, they seem to focus too much on liver disease and alcohol and often do not stress that not everyone out there with a liver condition has developed it this way.)

britishlivertrust.org.uk/li...

[Anne123_45]

Try taking all your tablets just before bed..

[Kaywal]

Hi sophie666. Urso makes my night sweats worse too. I have suffered from them also when not on Urso but I think it's something to do with increased the levels of acid. I've reduced the amount of usro I take now because the related insomnia was crippling. However, now my LFTs are creaping back up again (along with fatigue, and pain). Seems like you can't win with PBC. I've found that docs put everything down to menopause!

[Hidden]

Hello sophie666.

It could well be that you are experiencing temporary side-effects of the urso. I did start with heartburn, bloating and I did think the itch I had was considerably worse than pre-urso. I started urso in Dec 2010 at diagnosis. I only continued taking the urso due to the fact that 2mths after starting the LFTs and GGT were starting to decrease.

Unlike yourself I found that the urso caused constipation. Some do experience diarrhoea. How are you taking the urso by the way? I started mine on one at morning and one at night (I was on

600mgs per day). I have experimented with mine in the last 3yrs and found I am still better taking it like I started with. I did experience itching later morning when I took it all at once with breakfast, something that I do not normally do. I did know it was the urso in overload for me. Maybe you could space the urso out during the waking hours and you might find your symptons are not as bad if they are temporary side-effects.

Now I have no inclination to find out at whatever stage of PBC I might be. I am just not interested, never have been. For me I have PBC and I will just get on with life and deal with anything that comes along. The stages of PBC can last for any length of time and to me it is not worth worrying about it. I go with how I feel and I know currently my LFTs and GGT are better than they were pre-urso and I am feeling more like 99% as opposed to more like 10% that I was during 2010 just before diagnosis.

I was diagnosed with PBC due to at the time two symptons (itching and fatigue - fatigue has long since left me), abnormal and elevating LFTs and GGT and I had a positive high titre of AMAs. That'll do for me. Of course had the AMA been in any doubt the consultant would have mentioned having a biopsy but in the UK unlike America symptons and AMAs can give a diagnosis. In the US it seems the norm regardless of a diagnosis of PBC to undertake a biopsy.

AND I am quite confident that a consultant would know what stage someone was with PBC as I did see a tv programme the year I was diagnosed. 2 men having scans live on air, one was quite overweight, in his 30s and he was said to have fatty liver on the ultrasound. The other man in his 40s was described as alcohol and he was said to be in the stage of cirrhosis. I saw this programme whilst I was waiting for the results of the AMAs and that is one reason I think that a biopsy after a PBC diagnosis isn't something that is essential.

Take some time out to get your head round the fact you have PBC. I'd be untruthful to state I didn't need to do so. Once you start seeing better blood results and you get used to the fact the urso is here to stay (my biggest bug-bear, I was never one for taking any medications pre-PBC) and time starts moving on and you reach the year mark and like myself say 'I am still here', then another year and so on you can simply just get on with life. After all now we have PBC we have to enjoy life, do what we can as we never know what is round the corner.

[sophie666 in reply to Hidden]

Hi peridot thanks for your reply I was told to take my urso after meals 3 times a day I was constipated at first but now I have diarrhoea I have itching mainly at night n pains under my right boob I'm 57 n have been through menopause 6 yrs ago I live in Yorkshire I am constantly tired I'm text book with the symptoms of pbc I also have panic attacks and I take sertaline for depression but I've cut down on them because I read they are bad for anyone with liver disease xxx

[roseter]

I have been suffering with diarrhea and nights sweats for over a year now. The specialist said it might be the Urso so took me off to see whether that was the cause. After 6 months off the Urso the symptoms are worse and he says its nothing to do with pbc but I'm not convinced. Another thought is that it might be Crohn's which is another autoimmune disease?

[Hidden in reply to roseter]

Hello roseter.

I do reckon that night sweats are not really connected to PBC myself. I do think it is more probable due to hormones. I have recently started having periods of hot flushes and had a few more of late than I had been having during the last 6 months which were very few and far between then.

But I did start having an erratic menstrual cycle during last year and at 50 later this month it is signalling menopause. My mother passed away in her early 40s many years ago now so I hadn't got anyone close by to ask about the maturing years. (My sister had an hysterecetomy before she was 40 too.) I have worked with retired ladies up until quite recent and it seems that their experiences of the menopause have been to mention how they would be in bed at night and then wake up rather hot and all sticky. my neighbour used to be opening and closing her doors and taking off and putting back on a cardigan during the winter months when she was experiencing the menopause.

I am not too bad at the moment, never had any problems with my cycle throughout my life so far and hoping that the perimenopause I am currently experiencing isn't problematic too.

[GrittyReads in reply to roseter]

Hi Roseter,

At least 2 other people have posted on other question threads in the last day or so, saying that they have night sweats which are way, way, above and beyond menopausal hot flushes - one of them had been through menopause and said there's no comparison. I can't remember what they said about taking urso or not, but I'm sure one said it's definitely linked to PBC. I'm into my second year of the menopause and my hot flushes are fairly tame now. They can go away for a few months, and occur at any times - but predictably at a certain few times - but are mainly at night, and they are tame by comparison with what these women describe. Oh I think a man with PBC also said he got them. As to the diarrhoea, are you taking Magnesium? Too much can cause diarrhoea, but I think if PBC sufferers are not absorbing fat properly, the excess fat can cause looser stool. A friend has it bad with colitis, also autoimmune. I hope you manage to get it all sorted, take care.

[mumofthree]

Hi sophie666, URSO can actually cause the diarrhoea. When I was first diagnosed my consultant warned me that at first it may cause me to have diarrhoea and if it did, to cut back on the dosage and gradually build it up to the full dose over a month. I was initially prescribed 2 (250mg) tabs 3 times a day and cut it down to 1 tab 3 times a day then adding an extra tablet a week until I was back up to the full dose. Over the last two years I have tried taking them at various times during the day and have now found that what suits me best it to take them as 3 tabs twice a day, with breakfast and evening meal. I have also found that if I eat a meal with fat in it that causes me to have the dreaded diarrhoea. My PBC was diagnosed through the results of blood tests and was confirmed by biopsy to be at stage 1.

[sophie666 in reply to mumofthree]

Hi mumofthree I find the urso make me feel a bit spaced out but I think thats any drug as my bodys out of sync I have a lot of gas no matter what I eat but I have been eating healthy low fat food I drink quite a lot of coffee but you cant give everything up and I read that coffee is good for your liver I hope you're feeling better now you have found a way to take your tablets that suits you best xxx

[Hidden in reply to sophie666]

Hello sophie666.

I do not see urso as being a drug at all actually.

I have always seen it as a supplement as it is a component of bile acid and we are adding it to the system to give additional bile flow.

Apart from a bit of bloating and heartburn in the early days of taking urso I've not experienced any problems with it except for once when I read from PBC Foundation mag that you can take the whole lot of urso in one go at morning. I know some of you take it in the evening, I've not attempted that yet. I say that due to the fact that when I did some experimenting on how would be best to take it, I found that over several days of taking the urso all at once with breakfast just caused me to start itching rather badly a few hours later, something I do not normally do. Urso can cause itching as a side-effect and for me I think the whole lot caused this. I somehow think that as much as urso is helping, the itch hasn't been eradicated due to the fact that it is also causing this as a side- effect so it isn't cancelled out. It is said that urso wouldn't probably make the itch vanish.

I only itch at night you see so that is why I say that my taking it all in one go at morning wasn't very good for me and I dare not attempt it at night in case I itch more or worse still the itch doesn't simply vanish come 5a.m. like it usually does.

[mumofthree in reply to sophie666]

Hi sophie666, I believe that when you start taking something like URSO which is completely alien to your body then its not surprising that you may experience some symptoms/problems in the early days.

Before being diagnosed with PBC, other than taking pain killers I had never taken regular medication. Therefore starting on URSO was certainly a shock to my system, in the form of causing the diarrhoea, making me feel nauseous let alone remembering to take the tablets.

Every ones body reacts differently so my reaction may be different to the next person but with some similarities. I have read on this site that URSO does not agree with everyone, this may or not be the case with you, but personally I would suggest giving it a few months for your body to have time to adjust. With any drug/supplement they say it can take up to 3 months before they get into your system properly and before you feel any benefit. You could try cutting the URSO right back to one tablet a day and see how you feel over the next few days or a week. In that time if your symptoms have improved slightly introduce an extra tablet a day or every other day until your body gets used to that and so on until your on your full dose again. Its not easy but it will be worth it. 6 months after I started on URSO my blood readings showed a big improvement, 6 months later they were almost back to normal and 2 years on have continued to be steady showing that URSO is doing its job.

Your on the right path with your healthily eating. As far as ordinary coffee being good for the liver I do not know but Dandelion Coffee certainly is. I have been drinking dandelion coffee for over a year now, it doesn't taste anything like normal coffee but would say it is more like a weak tea and can be drunk with or without milk and sugar, my personal preference is black with no sugar. It is also documented that several small meals during the day is better for someone with PBC than 2 or 3 larger meals.

I hope you feel better sooner rather than later, be positive. Hugs sent your way.

[sophie666 in reply to mumofthree]

Thanks for the advice mumofthree and the hugs lol I have been on the urso for the last three months n my specialist says I need to take them in order to slow my condition down my skin is yellow and I have good days n bad days I itch every day and have pain down my right side and my back but I'm hoping to see some improvements in the coming weeks I hope you feel better soon you're young and it must be worse for you cos you have to see to your kids mine are grown up and my partner is very good xxx

[mumofthree in reply to sophie666]

Hi sophie666 and mb309,

This condition of ours is a bit of a nuisance isn't it, well that's my polite word for it anyway.

sophie666 - I am fortunate in that I don't have the dreaded itch but I do periodically get the pain on the right side which starts at the breast bone and goes all the way around and into my back. My worst symptoms are the fatigue and the bone, muscle and joint pain. Have you tried wrapping a warm wheat bag or holding a hot water bottle on your side because I find the heat does help to ease the pain somewhat. Arnica gel or Ibuleve pain relief gel rubbed into the area also helps but you have to be careful with the ibuleve because it contains ibruphen (excuse the spelling).

I only wish I was young, I've recently had my 54th birthday but sometimes feel 64, I was diagnosed in Jan 2011, I have 3 boys my eldest two are 25 and 23 and my youngest has just turned 15. My 23 year old has just informed us that we are going to have our first grandchild in October and invited me along with them for their 12 week scan, I was so excited but boy do I feel old, but I can't wait.

mb309 - I agree totally with you about having a forum like this. It was an absolute godsend for me in the first year following my diagnosis. Back in Jan 2011 I was not in a very good place emotionally having been hit with the PBC bombshell and feeling pretty crap. I didn't even think I'd be around to see my youngest grow up let alone dream I would be here awaiting the arrival of my very first grandchild. How lucky am I.....that sounds a bit smug... but I can't help but be positive about the future. In the first few months following diagnosis I didn't know if I was coming, going or been!!! I was an absolute mess going through a rollercoaster of emotions., I was totally immersed in feeling sorry for myself, why me, I thought I was going to die, I was depressed, I was angry, I was in denial, I thought if I didn't think, read or talk about PBC that it would just go away. It took from Jan2011-June2011 for me to pluck up the courage to contact the PBC foundation and then through their website found this forum.... I haven't looked back since.

I won't say it has been easy but it will get better. Just allow yourself the time to adjust both physically and mentally, not just to the medication but also by accepting your diagnosis. At one time PBC was the first thing on my mind when I woke and the last thing before I slept. I can honestly say that these days I very rarely think of it at all, that is until it rears its ugly head and slaps me in the face again. But I will say that the good days outweigh the bad days. I feel blessed and cherish each and every day that I am on this earth with my beautiful family around me.

Best wishes to you both and hope that you both will be feeling better soon. XX

[mb309 in reply to mumofthree]

mumofthree Thank you so much for your advice and words of encouragement. I too have been struggling with my PBC and taking my medication because it makes me feel awful (diarrhea and nausea). So glad we have a place like this!

[mumofthree in reply to mb309]

Hi mb309 I have sent you a joint reply along with sophie666. Best wishes XX

[sophie666]

Hi mumofthree thanks for your reply I'm so glad you are having a grandchild I too thought that I wasn't going to be ok I haven't been ill previous to pbc I feel like I'm taking part in a film that it cant be anything serious then I feel so ill usually during the night that I think I'm at deaths door. At the moment I just take one day at a time this is all new to me the worst thing for me is pretending I'm not worried about it to my partner and kids who are worried about me.i feel like they are watching me making sure I don't drop dead lol xxx

[Mickey1964]

Your stage can only be determined by a liver biopsy, your doctor should have told you call the office and the nurse should be able to give you that information...you might want to alert your doctor as you might need to take something for the itching and adjust you dose or do some diet adjustments loose or greasy stools is a sign of too much fat in your diet! Call your doctor!

[sophie666]

I don't think I want to know what stage im at as I will worry all the more I am in the UK and specialist says too many risks causing a bleed so I just take one day at a time xxx