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.
Written by
Jo_Br
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😕I'm so sorry no one is giving you answers. Your old hepatologist seems like the one who is eager to know what's going on.
How much gabapentin were you taking? I was taking 100mg twice a day. I didn't have any side effects.
It sounds as though you need Ocaliva. Shulsey who is on this forum is in stage 4 and on it. Others too may chime in soon and give you some solid advice.
It's awfully stressful not knowing where you are health wise, and even more stressful that your doctors don't know either.
It sounds like you have a couple of AI's going on. Is there no one in your area that knows anything about PBC?
So many on here at different stages and seeing good doctors. Maybe ones experiencing the same thing and can share what they've been told.
Everyone is different but at least you can take that information and share it with your doctors.
I'm sorry Jo_Br. What are you feeling like today? Are you still taking the URSO and gabapentin?
I am with George Mells at Addenbrookes highly respected and has a great reputation, trouble is I saw one of his colleagues last two times, who even said George should see me but then advised me I should go back in 3 months and they will ring re Fenofibrate after said delayed meeting.
I am still on Urso and Gabapentin Ktltel Ocaliva will not be used they said, both local hep and at the specialist unit. By the way, my former hep admitted she does not know as much as the guys in the liver units and also would not be able to put me on any of the treatments that the liver units are allowed to, also as I have the pruritus and its pretty full on it is best not so they said.
Today I am struggling with sinus and waiting for a call from a GP, we cannot just pop a pill these days and I am getting worse. Hubby is making me menthol bath bombs, bless him and I am trying some sinus pressure relief.
Thanks for replying I do not feel as alone with a few friendly replies.
You can also use eucalyptus in your shower & breathe the vapors. You may also try pure peppermint oils. Dab some on tissue & breathe it. Is good for opening sinuses.
So sorry to read that you are still struggling to get a definitive answer. As Ktltel suggests your former hepatologist seems more interested and I wonder if you could have a telephone consultation with her this coming week and see if she can give you some better guidance. I was again desperate at the end of last month and telephoned the hospital on the off chance I could speak to my Hep. and fortunately he was in the office. I had a good 10 minutes chat with him.
I knew a woman quite a few years ago who was "skin and bones" she had a low cholesterol diet but always had high cholesterol. I suspect you are already aware of this and I have taken it from the web but I know it to be true
"Oatmeal, oat bran and high-fiber foods. Oatmeal contains soluble fiber, which reduces your low-density lipoprotein (LDL), the "bad" cholesterol. Soluble fiber is also found in such foods as kidney beans, apples, pears, barley and prunes". I have oats every morning either in porridge or muesli. I suspect with your problems and commitments to Granny there is little time for a good 30 minute walk each day.
I take all my URSO with dinner around 6.30 and I suspect with the differences in our weight I take a larger dose :-). I started sertraline at the beginning of this month to help with the itch and 4 days later started gabapentine prescribed by the GP for peripheral neuropathy. I have been fortunate not to have any severe reaction to gabapentine. I was to start with 100mg 3 times a day for a week and then increase to 2 tablets three times a day and next week I am to go up to 3 X 3 each day but only if I need to. So far the gabapentine seems to have reduced the pain in my feet so I am unlikely to increase to the 3X3. It seems that it is a tablet that we can respond to as best it suits our needs.
As to your female hepatologist mentioning Gideon Hirschfield, he seems to be a leader in Liver Research, but I suspect you already know this, and maybe she was trying to reassure you that she had access to the latest information. I can only believe that the person you saw recently who would not prescribe Fenofibrate was not very high up the food chain. I am certain that I have seen people report that they have been prescribed it, but of course that may be our American cousins. It would seem that Mary may be able to give you some answers and again I would urge you to telephone her secretary and see if she can slot you in for a telephone consultation.
Needless to say I do not understand your rare form of PBC but I do empathise with your frustration and struggle for answers. I do hope that you can speak to Mary and that she will be able to suggest the Fenofibrate but if not telephone the secretary to Mr. Mells and leave a message asking for the fenofibrate - surely if the URSO is not working and they will not prescribed Ocaliva and there is an alternative in the guise of fenofibrate then surely you could try it.
I sincerely hope that you find the gabapentine settles down and that you enjoy the same success for your itch as I have found for the peripheral neuropathy.
As to the Reynauds and forthcoming winter - lots of pretty thermals my lovely - 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.
Aww butterflyEi I have some long reply but I am getting tired and looking down the sinus is playing merry tunes in my head. I want to come back to this post as you have some great advice and always need some humour.
They are reluctant to, it increases or can cause itching as the website for Ocaliva says. It was to be discussed at the meeting that they never had after last visit. ocaliva.com/ If you scroll down until the pages open you can see it.
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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. 
Still feeling low & confused
Hello I'm new! Bit confused about ALP and imaging options..
I really need some advice
Worried about high alt 
PBC/AIH, early stage of fibrosis confused.
