Scared

[Irisw]

39 and tested positive for PBC... shocked and scared

Please help

[ninjagirlwebb]

You will be okay. Please speak to your doctor & have him/her answer questions specific to your case. While folks have gastroenterologists or other primary care doctors managing pbc on their behalf, if you have access to a knowledgeable hepatologist, you might want to follow up with him/her on next steps.

You will be placed on urso & if you are in an early stage, your life expectancy is no different vs the normal population. The hepatologist can guide you & ordered whatever tests you need.

Hope this helps.

[Irisw in reply to ninjagirlwebb]

Thank you

Feels so scary

Hoping I can still function at work ok

I read so many scary things on the Internet about shortened life expectancy

[ninjagirlwebb in reply to Irisw]

The stuff on the internet is outdated! I understand what you are going through. It takes some time to absorb & be calm enough to deal with all of this. It is human nature. Actually if you get really busy at work, it might distract you for a while.

Just keep telling yourself you will be fine. Don’t jump into any conclusions until you get the facts from your doctors. Trust your doctors to explain everything to you.

[Anne29 in reply to Irisw]

PBCRobert has recently written a great letter on this have a look. It is realistic and very encouraging for the dark days we all share.

[iagra]

PBC is a VERY slow progressing disease. Urso is a primary medicine for it, but, if you are a non-responder, there are other meds that also work. Find a good doctor, GI or hepatologist and have them follow you. Everybody, at first, reacts like you did. But, then we get into the routine and forget about the disease most of the time. Very important to stay positive, active, to exercise and eat right. You'll do great.

Best wishes!

[Jacqui0112]

Hi

Please don't worry. While sites like these are really helpful, they can also be scary as you read everyone's problems, most of which may never happen to you. I have only recently been diagnosed and went through the same feelings as you. I am now two months on, the meds are working, the itch has virtually stopped and I have decided to forget about it and live my life. I have changed my diet a bit, gluten free(ish) and no drinking during the week!

My mum used to say, if you can't do anything about it - then don't waste time worrying about it.

I hope that helps. Good luck x