Help confused with diagnosis of pbc

[Misn]

Hi just been told I have pbc refusing to belive and have been kind of trying to ignore it but can't stop worrying meant to start urso 2 weeks ago still not started, could they get it wrong? Wil urso cause me many other problems as right now I feel fine only got noticed during random blood test for something else. So confused and not sure what to do to start taking the tablets then I can't come off them or not start helppp

[Flid]

I was diagnosed 2 months ago. Was also a bit stunned as it came up when they were looking for something else.

Have been on Urso for about 7 weeks. It doesn’t seem to have any noticeable impact on my life, other than taking a daily tablet. It is a small thing to do, considering the alternative of not taking it and letting the invisible threat of liver complications grow without doing my utmost I can to prevent it.

There is no reason NOT to take the urso so I would rather know, and take tablets, than not know, or bury my head in the sand and pretend I don’t, and come to regret it later.

No one can make you take the tablets. Your choice. You could ask for a second opinion if you question the diagnosis or act now.

[Misn in reply to Flid]

Thabk you for your reply, I think I'm just scared and probably finding it hard to accept it, not that I don't want to take it just scared of it affecting me long term 😔 i did just pick up my prescription so I'm halfway there just great to see how others are doing really helps me

[Flid in reply to Misn]

I know it’s hard to accept when you feel normal. It’s the shock I think when it comes out of the blue.

That said, I was waiting for confirmation for a while after the GP first mentioned it and that time was difficult. Knowing I may have a progressive lifetime disease and not taking immediate action was agonising. I would much rather know and take the appropriate action to help myself than just sit and wait for it to grow more serious.

The tablets, according to my research, don’t harm so I’d rather be proactive. There are people on here who have been on Urso for decades without problems.

I understand the fear of the diagnosis of a life long condition. The whole concept for someone who has always been well is difficult to get your head around but better to find out early than when it has progressed. This way you have the opportunity to slow it down.

[Misn in reply to Flid]

Thank you it's so helpful hearing from others as I don't know anyone with this so it's very helpful to me. I just have to accept it and start the tablets and just hope I get along OK with them. I have made that first step in collecting the tablets now just got to start taking them, thank you for your advice

[iagra]

If you were diagnosed with PBC, even if you have no symptoms, you should start on URSO right away. I hesitated for a couple of months initially, also being afraid to start on it. But, I've been on URSO for 7 years. Taking 500 mg twice a day. This is the best medication for PBC, for those who respond to it. I started with ALP 375, within 6-8 months it was below 200. My GGT dropped from 250 to normal range within the same period of time. Don't be afraid. You'll be fine.

[madtomdani]

Hi Miss

Hi Miss,-

I have had Pbc for the last 23years (I am now 75years old) I was diagnosed in March 2000. I was put on Urso straight away. The amount you take depends on your weight. I take 750 mg a day and this has not changed . It is an amazing drug. Like you I had no symptoms other than being extremely tired and my arm s used to itch. It took the doctors/specialists 3 months to diagnose Pbc. My blood count was 1002 and the norm , at the time was 120 . I currently feel fitter than I was in my 50s. I see my Specialist every 6 months and that is purely because of the amount of time I have had Pbc. I hope my experience helps you. Regards Davina. PS I live in the UK,

[Misn in reply to madtomdani]

Thank you this is really been helpful to me, its good to here you all do so well on the tablets, I really hope that will be the same for me. It has been a really scary confusing few weeks but I feel like I'm now coming to terms with it and feel so reassured after hearing from everyone here. Thank you for sharing and I'm glad to hear your doing so well x

[Candy12]

pbcfoundation.org.uk/

I’ve put a link to the PBC foundation being newly diagnosed can be a worrying time and it’s the best place for the correct information. Its free to join and was the best thing I did when I was dx 13 years ago. I never had any symptoms so taking a daily medication was hard at the time, but as learned more about Urso and PBC it became easier. Give the foundation a call they can reassure you on anything PBC related. Knowledge is power as they would say.

[gillrich]

Urso is a very simple medicine, good quality man made bile an incredible tablet . Taken according to your weight and most times no side effects and or the majority of people works wondersShare your worries vwithe the pbc foundation a wonderful organisation started nearly 30 years ago for all accurate and up to date information

Pbcfoundation.org.uk xxx

[Lollypop89]

Hello, like you I have not long been diagnosed with PBC, I have been taking Urso since august this year, I did suffer with headaches for the 1st month but these did disappear. My doctor did blood test after 8 weeks of me being on Urso and ALP levels have already reduced which is great news.

I had never heard of this disease or knew anyone who has it. The PBC foundation has so much knowledge and there is a Facebook group I joined which all the people on there have been a real support and have valuable information/experience to help you x

You are not alone good luck xx

[Misn in reply to Lollypop89]

Thank you so much already had so many supportive messages on here it's really really helpful and I no longer feel so alone with this, always helps speaking to people going through the same so thank you

[Misn in reply to Lollypop89]

Hi

I just started mine yesterday and today I have a headache, I get them quite often usually anyway so not sure if it's coincidence or its because of the tablets, but do you take paracetamol or have you been told you can or not as I'm. Not sure if I can take them while on these tablets. Thank you

[Lollypop89 in reply to Misn]

I didn’t take any paracetamol as I wasn’t sure I could take them, but I think now my doctor says I can take paracetamol for any pain, so I wish I did take them as I did find the headaches bad. Actually bad enough that I ended up going to opticians and getting my eyes rechecked and new glasses. I feel totally fine now so these headaches should pass xx good luck 🤞🏼

[MSJT in reply to Misn]

Hi, I was just wondering how you are doing on your Urso tablets. I came across your post and it is exactly how I am feeling at the moment. I have just picked up my prescription today but haven't taken any yet. I hope they are working well for you.

[Misn in reply to MSJT]

Hi

I know exactly how you must be feeling and to be fair I haven't been on them that long, it took me a while to even start, it was only this forum that helped me as I hear a lot of people who have been on them for years without issues, the first week I did notice I had bad headache for about 2 to 3 days maybe not related but that was all they seemed fine after that, felt my normal self, 2 weeks after I had bad throat pain which is still not gone which has been checked for other things but not sure if it's related to taking them but it did start after taking them and so for the past few weeks I have stopped taking them to see if it helps and my throat pain is easing off. So not to confuse you it may be totally coincidental as I otherwise felt fine and even less tired than I normally would be. I take them as I feel I have no choice either believe the diagnosis and take them and hope they help or I don't and could possibly get much worse in future. Sorry to hear you have been diagnosed but I would say to try them and see how it works for you. I have read they are mild and as I read from others it seems to have helped them.

[MSJT in reply to Misn]

Thanks for your reply. I have decided to start taking them tomorrow. Hopefully they will help.

[Rozzie52]

I have been diagnosed with PBC 5 years ago now , you should take your ursodeoxycholic acid , as it will start you feel better in next few months and you will be able to carry on your life , take Vitamin D and vitamin B12 as the liver doesn’t absorb vitamins very well.

I know it’s hard to get your head around the diagnoses at first after a while you will feel better.

I hope you feel better soon Roz

[Misn in reply to Rozzie52]

Thank you yes after hearing from everyone I feel a lot better about starting it, no point me dwelling on it and wondering if they got it wrong anymore just got to get on with it and accept it. It's just so nice to have others to talk to.

[Rozzie52]

Take care, I am glad you are feeling better about your diagnosis, I couldn’t believe it either, as time goes by you feel better about it. Be kind to yourself xx

[Readlots]

Hi like others I’ve been on Urso for many years with no ill effects. My consultant described it as ‘like washing up liquid for the liver’. I feel lucky to have it because my Mum was diagnosed withPBC decades ago before any treatment was known. There is also some research indicating that it protects against Covid. I hope this helps with your decision. Be kind to yourself while you’re adjusting to this new diagnosis.

[swinstan]

I was in your position 20 years ago. Random blood tests for another reason showed antimitrochondial antibodies, leading to PBC diagnosis. No symptoms whatsoever - ever. Effectiveness of URSO not well researched back then so I was reluctant to take them. Eventually research showed that it did work but not for all people so I started taking it. Worked for me. No side effects at all and just one annual blood test. I have remained on URSO for about 18 years now with no progression of PBC. No symptoms at all and just getting on with my life. I have the antibodies but LFTs have always been fine.

[Misn in reply to swinstan]

Hi

I can imagine you must have been concerned back then, but it's so good to hear that you are doing so well and no progression is amazing and that makes me feel a lot better, just really hoping the tablets can do the same for me, so far its only been a week but no obvious side effects. I'm so grateful for this forum as I was in such a bad place when I got told this and was so scared where as now I feel a lot more positive about the future.

[swinstan in reply to Misn]

Try to keep positive. As they say, more of us will die 'with' PBC rather than 'of' PBC. I think the forums present much useful content for those less fortunate who are having some problems. But many of the people diagnosed are less affected and are simply getting on with their lives. The forums are doing a brilliant job supporting those in need but sometimes it presents a rather biased and scary picture. There are lots of us out there who are just fine and maybe just sometimes we should shout a bit louder.

[islandanonymous]

Just wanted to chime in...I was also diagnosed out of the blue (almost 11 years ago now) and unfortunately the PBC had already caused cirrhosis. I have had absolutely no reaction to Urso and apparently it's doing its work because my blood tests are completely normal and have been for years. For my last Fibroscan I got my best results ever. I wish I'd found this forum in those first years after diagnosis!