Now what?

[dbjdid3]

Just found out I have PBC.had symptoms for two yrs at least.tired all the time.do I tell my family and kids.noe what

[jane1964]

Hello ,

I found it helpful to tell family as them understanding  what my problems were caused by helped them,and we face things together.I found it very hard at first to admit just how I felt and I still find it hard to ask for help.I told my children although they were all of an age to understand, young adults.Whether you would want to tell yours and what to tell them would depend on their ages and how you think they will react.I didn't want to burden my children with the worry but there was obviously something wrong with me as I suffer very badly with the fatigue, so it became better to tell them.

Whether you chose to tell family is a hard decision and you know your family best but I found it helped me, you need support yourself,so in any event I recommend the pbc foundation website it has lots of good helpful advice and you can call them too, they have really helped me, as has this forum.

I wish you and your family well.

Jane

[dbjdid3 in reply to jane1964]

Thank you Jane, I called and told my parents today,,I don't think they were ready to here something like this,but I felt they needed to know,

Andnow I can finally explain why I've felt so tired for so long, I kept saying I'm too young to feel this tired. And it helped explain other symptoms, like not sleeping. Tvhanks again to all who have responded. 

I've never been one to ask anyone for help,but I just want to know what to expect  does the med.help with the fatigue?  Am I going to eturn yellow, what's gonna happen?

So many questions 

[Hidden in reply to dbjdid3]

I will try to answer your last couple of questions - remember though, I'm not a doctor, so I can only speak from my own experiences. Also, one thing to remember is, we are all different, so we all experience PBC differently.

I was diagnosed 27 years ago (biopsy indicated Stage 2), I am now Stage 4, so I think I have done quite well. As yet, I have not turned yellow (jaundice) - from my understanding, it is having a high Bilirubin level that usually results in a person becoming jaundiced.

healthline.com/health/bilir...

There are some medications that are given for fatigue, I'm not on any of those so can't really give you much information about them. I know from some of the Facebook support groups that I am on, any one particular medication does not work for everyone, again as I said, we are all different, and react differently to medications. 

Now, if you were asking whether or not the Ursodiol medication works to alleviate fatigue. It hasn't for me, but others have felt it has for them, so you could be lucky. I'll pop a link in here which gives information about Ursodiol, i.e. uses and side affects. 

Hope this helps ^-^

everydayhealth.com/drugs/ur...

[Brummi]

Hi, from experience I would explain things to your family. I held back but started to get ratty with family and friends due to fatigue, this saved a lot of arguments.  Besides it's good to talk about it. Hope this helps and all turns out OK..

[Angelsww]

Hi Firstly don't panic,

There is some really good information on certain websites. Just be careful where you look. The transplant hospitals at Birmingham, and Newcastle have good up todate resources and the liver trust has some good info too.

You don't say what symptoms you have and to some extent it is immaterial. As we all have very different symptoms and often the symptoms don't indicate the severity or the progression of the disease.

Are you on URSO? if not make sure you ask your GP why. Dr Hirschfield at Birmingham  is an expert on PBC and recently did a talk on PBC he said it was so important to be on Urso regardless of the symptoms you have. Only if you don't respond to it after so long, should you not be on it.

Tiredness is so hard to cope with, all I would say is do what you can, when you can and rest if you need to.

You should no that many people live to a ripe old age with PBC and never get really sick, so it's a case of learning to live within limitations. I was diagnosed 14+ years ago, but no I had symptoms for maybe even ten years before. I had ups and downs over the years, but had a good life until maybe about a year ago when things really deteriorated. I am now waiting transplantation.

What you should know is that, it is different for everyone, and you will hear lots of horror stories. But just take it with a pinch f salt as your journey will be unique to you. Just try and keep fit and well, eat well and try to get exercise when you can.

[dbjdid3 in reply to Angelsww]

Thank you,And yes I am on 600 mg. Eurso a day,you have all been very helpful.nice to get feedback from those who have been before me.it helps,

[teddybear7]

If you haven't already. Join the PBC foundation They're really helpful. & stop you panicking. The info is spot on. X