The reason for the title is mainly for people who may come along and have my diagnosis, also it will hopefully show up in Google searches, but not be as scary as the medical papers and Wikipedia.
I have got a few answers about it. Addenbrookes have confirmed that it is a more progressive/aggressive form of PBC and I also spoke to Robert at the PBC Foundation (if you have any questions regarding PBC a big shout out to the tireless work they do in supporting us and improving information.
So a little bit about my journey, click on my name and you will see it has been a bit of a rollercoaster, being told I had not got PBC, then I had, then I had not. Finally it was confirmed I was 6 weeks ago and then my questions went through the scale of questioning. Was I going to die faster, need a transplant more urgently, was this why the fatigue is crippling, the itch unbearable?
So firstly I am AMA negative. The blood tests needed for confirming this are known as Antinuclear Antibody Panel (ANA tests) so if you have symptoms and Liver Function Tests that are abnormal but inconclusive for the Dr checking, ask for these, I would suggest politely push for these and get a referral to a liver specialist you are entitled to this.
It may save you several months of what I call faff!
I had already accepted PBC in March 6 months after testing began. Then in limbo when it was said in May I maybe had PSC (Primary Sclerosing Cholangitis)
I actually at this point was hoping for PBC over PSC daft as it sounds.
So I googled and googled while waiting, I feel knowledge is power and so it became PBC with positive for Anti GP 210 and M2 E3 BPO with not much info beyond Dr Google, I found it is more aggressive, higher comorbidity and so these 6 weeks have been a little tricky.
Once confirmed Urso is the go to treatment and that there is hope that if treatment is working I have a chance. I will be monitored more than usual and that gives me and anybody with this diagnosis some reassurance.
For any PBC, this may be enhanced with OCALIVA (obeticholic acid) or in the future a few more treatments as they get licensed.
The itch is treated still, but not all of the routinely prescribed treatments can be used. I have been prescribed Gabapentin.
What I most want to say is hey it may be more aggressive, not all PBC is the same, yes I may have wobbles and down times and worries, but I am here today having had a lovely meal with my husband, going to watch a film and life goes on.
Please ask any questions and if I cannot answer I will be asking my hepatologist and his fine assistants as I said not enough is out there for the smaller PBCers who have this journey and they agreed.
Factually the realist in me read lots and the best non-frightening pages I found are these. Again I was not frightened but if you are at all having a tough time with the whole PBC diagnosis leave google and links be for now.