Just Diagnosed

[Y-now]

Hi, I'm new here. I was just diagnosed with PBC end stage. Last 6 years or so my symptoms now make sense. But I'm nervous about what comes next.

Dr. Prescribed URSODIOL....

Can someone advise me about the next steps?

[4pjx__]

How did they come to that conclusion ? Did you have a biopsy ? Did you see a hepatologist ? Whatever stage you are in the Urso should help slow things down. Stay hopeful you can get better.

Pam

[Michiganpbc]

Hi so sorry you have this I am stage 2 PBC, URSO is the treatment for PBC so you are getting the proper treatment, what did your liver doctor tell you?

[Y-now in reply to Michiganpbc]

I've only seen him once. He started me on URSODIOL I just had more bloodwork and I'm waiting for authorization for a fibroscan than I have another appt with my liver specialist end of July.

[Jlruggie]

Y-now,

Did you say you have "end stage" pbc? Do you mean stage 4? I don't understand. What are your symptoms?

Jlruggie

[Y-now in reply to Jlruggie]

I have extreme fatigue, crazy itching, loss of appetite. And a couple times a month my belly bloats as if I'm 12months pregnant and my ankles and feet swell calves down.

[Jlruggie in reply to Y-now]

That sounds terrible, I'm sorry you are having such symptoms. Did doctor prescribe Ocaliva with Ursodyoxycholine? Together they are supposed to take your enzymes down. There are medicines for itching, I used to itch and I took epsom salt baths then slathered different lotions till I found one that worked. I was over eating but since then I stopped that, now I exercise too. Will you have a transplant?

[butterflyEi]

Hi Y-now

Welcome to this group although sorry you have to be here and to be diagnosed with end stage. Are you being placed on a transplant list?

Ursodiol (ursodeoxycholic acid) is the first line of defence to slow PBC, new on the market is Ocaliva. I cannot guess from your post in which country you live but to the best of my knowledge Ocaliva is available in USA, Canada, United Kingdom - recently Scotland and I am sure many other countries as well.

You do not mention what symptoms you have but fatigue and itching are the two main symptoms together with brain fog.

Join the PBC Foundation, free to join, in the members section there is a compendium which is up to date and accurate as well as other useful information, not so some of the web sites on Mr. Google.

Although PBC is not caused by alcohol it is helpful to cut it out or down and avoid fizzy drinks but drink plenty of water to keep yourself hydrated and keep coming here for support. We are a great bunch of people and when we cannot help an email or telephone call to the PBC Foundation will help.

best wishes

[Y-now in reply to butterflyEi]

Funny you should mention fatigue itching and brain fog. I've had those symptoms for years. Finally answers.. not exactly the ones I wanted.. But at least I'm not crazy.

Dr did put me on URSODIOL. I've been on it almost a month 600mg a day. I'm starting to really itch my ankles, especially at night. Maybe from the medication.

In the past year I've had my thyroid removed also my gallbladder. Now this.

My youngest just graduated high school and will be going to college in fall. This is why I called myself ... Y-Now

Thank you for you words

[PBCRobert Partner]

Hi, Y-now.

Please get in touch with the Foundation and we can help start to address your many questions.

I have been working in the Foundation and I am unsure what your doctor means by end stage. It doesn't sound great news, but I am sure we can helpy uo get to facts as opposed to fear.

Yours,

Robert.

[bobbycat]

I wonder if you mean stage 4? That is the last stage of PBC and usually cirhossis .... but is not the end stage. Good luck

[Y-now in reply to bobbycat]

Possibly.... I get confused simetimes

[Y-now]

Thank you so much.