An update, I seem to have been writing no positive posts of late.
My latest 6 weeks check up at Addenbrookes, again I did not see George Mell, he is only seeing new patients and each time I attend I seem to be more worried and find that I am not getting answers or politician type answers.
I even asked for some reassurance with regards to AMA negative and the Anti-GP 210 and M2 positive and left feeling they know as little as myself.
My bloods are still all high and very high. Urso is not bringing them down, 4 weeks before this appointment I had a letter saying second-line treatment to be discussed.
Sorry tangent here, I saw my old hepatologist the week before, she wanted a catch-up, she has had to come out of semi-retirement as 'it has been chaos with the locums' and she asked if I would stay on at Peterborough just so she can see what is happening and if I need any help. Aso mentioned she is 'very good friends with Gideon Hirschfield, not sure of the relevance.
She said that she had been communicating with Addenbrookes and I was to be given Fenofibrate as Ocaliva can increase the itch. I was relieved to hear.
I was to have a scan on the day as I have not had an actual liver scan just a scan of my womb and at the time my liver seemed OK with a perfunctory sweep of it and kidneys.
I arrived and the scan was in the notes but had not been booked, not too worried as these things happen.
Then I was asked how I was getting on with the Gabapentin, this took some time as I had some very dodgy days with it (terrible crying, anger, this is not me at all, staggering about almost as if I was drunk and really drowsy since I started but bar the drowsiness all other symptoms had settled) and wanted to ask if it was OK not to increase as in the daytime I cannot sleep or stagger hehe as Granny to tend to.
He said just come off it if you want to!
I was shocked to be honest I mean 10 days is not really a long time to try and as it knocks me out I am only itching in the day, not sure if it's stopping the itch though.
I then proceeded to talk him and myself into carrying on for at least a month. Again I was told if you want to, that's fine.
I asked my set of questions I had written down.
Reynauds is becoming worse, he said it was a separate issue and I would need to see my GP to be referred, am I wrong even if treated by a different clinic its still linked to PBC as he said it was not.
I mentioned the xanthelasma and he said that they will run a cholesterol test. I am 8 and a half stone, skin and bones and eat a low cholesterol diet. I cannot really lower it can I?
I asked my other pain relief type questions (no more than 4 500mg paracetamol can be used and only if really suffering) and can I take my Urso in one sitting as I feel that may help it lower the enzymes and my brain fog sometimes has made me drop a dose only 3 times though, he said yes.
Then because he had not raised it I asked about the Urso and being a non-responder as Mary old hep had said and I had had the letter and what would I be taking.
He said we have to have a meeting as Fenofibrate is not licensed/authorised in PBC and the meeting would hopefully take place later that afternoon. Well this bothered me as I traveled the distance, had my bloods done early the week before to save any other letters with results that raised questions, no scan so it was really a waste of his and my time and a days holiday for my husband to take me.
Then I asked the one question that has been burning and having discussed it with the very rare PBCers (5 that I can find) that have AMA neg with A GP 210 that none of us seem to know of anybody with this having been transplanted. I am progressing fast it seems and I said this is worrying me, if I would not be transplanted I would like to know. He discussed UKELD and I said my figures are one point short of it, he then mentioned that transplant is the last resort, treatments tried first my pruritus is a factor as well. But the Urso is not working and fenofibrate has only some success (could be me in that some success of course)
I asked again slightly different wording but still are AMA negative with aggressive factors transplanted.
His answer was that its a relatively new finding, I agreed its 4 years that I can see, maybe even noted in 2009 and that they know less about it.
I feel so so lost in this journey, I feel I cannot glean any comfort from positive stories of PBC and also is it actually being researched and or patients do get the transplant if at that point. I want somebody to say ' No we don't and I can stop fretting myself, or yes we do, stop fretting.
On a better note, I have enrolled into the Cohort study in a few weeks, hoping that it helps everybody and I am having some success in using mind over matter with the itch.
Seriously though have you looked at the Reynauds web site they may suggest clothing which will help other than that ski wear can be useful. I seem to also remember in the dim and distant past a friend with Reynuads (she lived in Austria - definitely cold in the winter) drank ginger tea and used a cream which may have been ginseng or cinnamon but I am not sure. 
Feeling a little frustrated
Super Confused
Fibroscan norm?
Researching and scared and confused 
Confused
