Hi. I was diagnosed with PBC a few days ago and am struggling with it all. I have very mild symptoms which I put down to underactive thyroid with which I was diagnosed 14 years ago.
The more I read the more scared I get. I had no idea such a thing existed.
Mind blowing. I can't sleep, eat or do very much at all.
Hi LindyRich,
I know exactly how you feel. Coming to terms with the diagnosis took me a couple of months. I was dx just before Christmas last year, so just a couple of months ago. I hadn't even heard of PBC before so I spent a lot of time researching. The more I looked on the Internet the more scared I got. Then I joined the PBC foundation (it's free) and they have some very useful leaflets which explains things simply and answered a lot of my questions. I've been trying to find out why me? No real answer to that one, I thought it must be something I'd done to make myself susceptible to PBC. I think that was quite hard to come to terms with...if I hadn't used to smoke...if I didn't vape...if I hadn't died my hair...if I didn't use perfume. Truth is they don't know what triggers PBC, so I've now come to terms with the fact it's just bad luck.
I also sent for a dvd from Liver North...if you go on their website they will send you a free information dvd, which is very well done and explains all about PBC, treatment and way forward.
Also have a read through people's posts on here and you will see there are many of us on here who have already gone through what you're going through right now. You will come to terms with the condition in time, and you will see that it's not a life sentence. In my head I've likened it a bit to having diabetes, you might have to change your diet a little to one that reduces foods that put extra pressure on the liver, you may have to reduce alcohol intake, but in my experience this has come naturally...and I did like to go out and get quite drunk in the past. I still have the odd drink, but when I'm feeling rough the next day my subconscious reminds me that I'm putting pressure on my liver and it doesn't like it...so next time I go out I have a few less!! This condition doesn't always lead to cirrhosis, and taking Urso helps slow down any potential damage to the liver. I think the worst symptoms of this are the tiredness and the itch, but these symptoms vary widely between people. If your symptoms are very mild now they may remain as such for many years to come. look at the statistics...only a small proportion of people go on to develop cirrhosis, most people die with this condition rather than from it.
With perhaps a few lifestyle tweaks you should be able to carry on pretty much the same as you do now. I know all this is easy to say, but it's taken me 3 months to get to this positive frame of mind...you will too...just take your time and use this forum. They're a lovely helpful bunch on here and someone will always offer you some support when you need it.
Take care
Hilary xx
Hi Lindyrich and welcome to our happy group. Hils67 has given a great answer. For myself I was diagnosed about 10 years ago and went into denial and ignored everything. In the end the itch went active so I started reading more and in this last 10 years the reading material and resources has grown. Try not to frighten yourself with too much research. Trust your body to tell you how you feel. The best bit of info I found was more of a saying really PBC is not a death sentence more people die with PBC than because of it. We all of us seem to be different although some symptoms are the same such as itching and fatigue.
Hope this is helpful
Best wishes
Thank you for taking the time to reply.
I feel less alone now. That's the worst part, not knowing where to turn.
My family have been supportive but I don't want to freak them out with too much detail either.
Thanks again
Hi 27 years ago I had to have a hysterectomy which resulted in my thyroid stopping working and becoming under active. I was in early 30s so my body went into shock and in following years other things happened, ovaries removed, lung problems etc. The consultant I saw in November who confirmed I had pbc said he thought I'd had it for many years as many symptoms mirror . I was in shock at first but with help of this site , DVD from liver north, Rob on here calling me up and chatting away I began to come to terms with it. I have other problems being looked into at the moment that maybe pbc related but my gps are very good working with me. it is scarey but the recent article in the Sunday post gives us all hope. I'm struggling with the itch and tiredness but I have 2 cousins who have battled breast cancer and I am no way in the state they are. Always someone out there worse off than us. I tell myself. Please contact Rob on here he is lovely. We are all here for you and all feel like you. Take care x
Thank you for your encouraging comment.
I will have a look at Liver North as you suggest.
They have a great DVD and good support system and also lots of leaflets that you can share with family. I got extra ones and gave them to my GP practice. Everyone on here is great but you may find people near you that you can talk too. That has been a godsend for me. I got a paper copy of people near me. Did you? X
Relax Newby, I was diagnosed years ago and still going strong, there is medication that will help, also its a slow progressive illness , so no worries, you wont die from it, keep smiling, xxx
I just found out I have Pbc a couple of days ago and am so concerned and stressed! I have a ten month and a 2 1/2 year old and I had to stop nursing cold turkey and I am a mess about it!!! I am 39! My question is do u have it all your life and something makes it flare up or do u just get Pbc one day?
I only found out I have pbc this week too.
I freaked out at first but the information and encouragement I have received from other members on here has helped tremendously.
Keep on posting and asking questions they will help you.
I am inexperienced so I can't offer any further suggestions.
Take care
If you haven't already join the PBC foundation all the info & help is wonderful. It's really is the best place. I worried terribly the first year but with their help I'm in a good place. Xxx
My advice would be watch what you read. I was diagnosed at the beginning of Dec. Very scared and thought the worse. I thought I was starting the menopause and this was thrown at me.
I hadn't felt right tired whether I'd had a good night sleep (which was rare) or not. But since starting urso I feel like a different person. Also I did get told I was peri menopausal. So I was going around the twist then. I'm fit healthy youngish at 46 and hoping it stays this way. At the moment other than changing my eating habits , I try to eat healthy anyway, it has not affected my life at all.
Its not all doom and gloom. Mine was caught very early on. Chin up ☺
I was diagnosed 13 years ago and have been symptom free for all these years. The Professor who diagnosed me at the QEHB in Birmingham said PBC is usually found in autopsy when the person has died with it, not because of it. I have not changed anything, not my drinking habits nor my eating habits (although I do try to eat healthily regardless) and just get on with my life. I think its far too easy to get caught up in it all, I just go for a check up a couple of times a year and an ultra sound and then I forget all about it until my next visit. I do take Urso, which I hate, 3 x a day, when I remember!!!!
Hi there,
I was diagnosed 6 months ago and felt the same way - I thought I was going to die before I got to see my younger son start his family and so much more. My husband just retired and we were planning so many things that this stopped me in my tracks.
Then I realized it's my time and time cannot be wasted. I found this site and heard from people who has survived years with this disease. I was already Stage 2 and I still did not know if Urso would work.
It did. My first visit after the Urso was started showed my numbers were back to normal - almost. I go for blood tests again next week to see what has happened. and if they are OK - visits every 6 months.
One day at a time. That is all we can do anyway.
Best,
J
What happens to me next!!
Can itching come and go?
Is my consultant right?
Can anyone tell me if bile is the same as stomach acid?
Have any of you started itching when you started URSO?
