PBC Antibody GP 210 What does it mean?

[Jo_Br]

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.

en.wikipedia.org/wiki/Anti-...

ncbi.nlm.nih.gov/pubmed/267...

[butterflyEi]

Hi Jo_Br

So glad at last you have your diagnosis.

The only question I can think to ask - is the so called itch of PBC being controlled with Gabapentine? I know it has been a very troublesome symptom for you.

So lovely that you and your husband were able to enjoy a super evening out together.

best wishes to you

[Jo_Br in reply to butterflyEi]

Yes but still not taken, I have Granny to think about and being very drowsy, need to pick PBCers brains about what it does, side effects seem quite alarming. Though we did laugh as whilst waiting for blood test I read the drug info leaflet to my husband, it stated that family should be aware I am on it. I read out patient may become agitated, hostile etc and husband Chris says "How will we spot the difference" I put my fist up and said do you wanna see hostile?" He pretended to defend himself with his arms up. The blood test queue there all laughed, small room.

Have to lighten these moments!

[GrittyReads]

Hi Jo_Br,

So lovely of you to share your journey and all your hard-won insights and info with others. Also glad to hear you are chillin' and treatin' yourself!!

You take care,

Gritty

[Jo_Br in reply to GrittyReads]

Thanks Gritty!

[drewh]

Thanks for your journey story Jo_Br. Hope your PBC journey improves. Am AMA positive myself. Took a couple of days for me to let the disbelief and shock dissipate after initial consultation with a Dr M at Addenbrooke's a couple of months ago. Medics in family were also in disbelief at first. Will decide on Urso when I go back to hosp later this month. Itching is variable, mostly tolerable. Was horrendous on my hands after I had picked up a mango in mistake for a papaya. Spent until 5am unable to sleep. So went to Dr Google and discovered mango is a member of the poison ivy family and can cause itching in some. Never had mango itch before, and wonder whether susceptibility is an addition to the PBC story.

Desperate for sleep I searched Google further and found an old home remedy for itch was to cover skin in honey. I was so deranged by the itch at that point that I tunneled into the provisions cupboard, largely left as it was when my wife died 10yrs ago, in a search for honey! Finally found some at the back. Plastered my hands with the aged and crystallising honey. After 3mins felt a bit foolish and kind of hamstrung by sticky hands so I washed honey off, washed taps, and vainly returned to bed. 10mins later I realised that the itch had abated more than somewhat, and I fell into a deep sleep.

Looking at a list of locals with PBC that I have been sent I seem to be the only male. Wonder whether the girls meet up at any point for a chin wag and maybe dairy-free tea. Take care.

[Jo_Br]

Hi drewh

Ahh another one at Addenbrookes, we may pass ships. He only has a Weds morning and Thursday afternoon clinic.

I am pretty new to this and only friends, again new are in the virtual world.

I would love to meet up, it would be great to talk. I am about 38 miles from Addenbrookes. I had not been for years, it's like a small town isn't it?

I am not AMA positive, I am in the 5% of PBC that is AMA negative, hence it's been a trickier to diagnose year. I was tested for other things too.

I have found as my itch is most definitely under my skin, inside any surface treatment has not much effect, but honey is a miracle potion, hospitals are using it again for wound-care. So if it's working never stop.