This is a quote from the section on treatment. 'There is no cure for PBC, but there are medicines that help relieve the symptoms and slow the progression of the condition.'
my question to you all is what treatment have you been offered for the symptoms of PBC particularly tiredness and memory/ concentration problems? I understood that there were no treatments approved for these symptoms.
Just urso really.
That's right, there's nothing you can do about that sort of thing. Keeping active and getting plenty of rest are the best suggestions. I am nearly 70 now and find it harder to do everything but up till a couple of years ago I went to the gym regularly and was able to do all the same things as my friends do, just at a slightly slower pace. I have Scleroderma and Sjogren's and Rheumatic Heart Disease as well as PBC so I am well aware of the problems you are facing.
i am asking for two reasons - most important is that i am really struggling with fatigue and memory/ concentration problems. I have not been able to work for about 2 years but i was hoping to return to my job in march. Exercise hasn't really helped me at all and while resting helps me recover from doing something, it doesn't help me to build up an energy 'store' so that i can keep going for a whole day. i have had no relief at all from the brain (memory an concentration) problems. I try reading every day but i have such problems processing anything beyond the most simple information. The ability to stay awake, to concentrate for long periods and process complex information are key parts of my job.
I've been through one course of cbt which wasn't particularly useful and I m now doing counselling though to be honest, i am not sure what the value of that will be. I think that my doc still thinks i am depressed whereas in actual fact i am just frustrated that i can't make plans for my future until i know whether I will be fit for work or not.
The other reason that i am concerned about the information on the NHS Choices website is that this is the information used by social security decision makers to decide whether someone is entitled to disability benefits. If they are working on the assumption that there is an available 'cure' for our symptoms then no person with PBC will be considered to be disabled as a result of their symptoms
I actually live in New Zealand and because of my personal circumstances have never had to work. My husband had his own business and my part of the partnership was to run the house and look after the children. A doddle really but we both knew that I couldn't cope with much more than that. I took part in school activities for the children's schools, I would swim regularly with a group of friends and more lately have been going to a gym. I can't do any of those things now and when the family gets together it is our grown children and Grandies who do all the work.
Yes concentration and memory are a problem. I read lots of books and know that I can't remember all the finer details of a mystery for instance, biographies are easier to follow!! I am always in awe of our daughter who can read up about something and remember it all.
From what I know from folks in the UK and US the question of disability compensation is not affected by the so-called 'treatment' which is actually not available. If you want to apply there is plenty of help and information about as far as I have heard for help in preparing your application. I would expect the PBC foundation could offer help in that way. Otherwise there are most likely people on this forum who will be able to offer help
See this section on DWP site. It might help you
dwp.gov.uk/publications/spe...
And remember, the severity of symptoms such as fatigue and cognitive dysfunction do not correlate with the pathology of the disease xx
Thank you Tessa. I have looked on the DWP website for information and they seem to refer decision makers to the NHS choices website. The care and mobility page is a bit odd too because it says that "As the disease progresses severe fatigue may limit daily activities" which implies that severe fatigue is characteristic of later stages of the disease whereas it seems to be the case that fatigue can be severe from very early on and as peridot suggests below, it can resolve itself for no apparent reason even when other symptoms don't resolve. The DWP page goes on to say that "The severity of the fatigue may not correlate closely with other symptoms and signs of the disease." which seems to contradict the earlier line.
It probably seems pedantic to pounce on this but i know that the decision makers, the assessors and the DWP medical services don't always have access to detailed information about PBC (or sometimes no will to look for it). If they use the information that is easily accessed, it might explain why people have difficulty getting benefits without having to go through the stress of the appeals process.
Hello SC49.
The only treatment for PBC at present is ursodeoxycholic acid (urso). That is all I take.
I do suffer with the itch at night but have not asked a doctor for anything for it (and to be truthful now, when I did mention to the hospital consultant back in Oct 2011 he just never said anything!). You normally start on colestryamine (Questran) for the itch in the UK (not sure about other countries) to see if that makes any difference and then progress to a few other harder ones (one I believe is used for depression). I've not ventured to ask for anything due to the fact I do not want to take any other medications. I do not like having to take urso as I loathed taking any pills prior to 2010 when I started with the itch.
Not sure about anything for fatigue. I did have this back in 2010 the year of diagnose but the following year at some point it vanished and I do not really suffer from that anymore. I do get tired the odd time if I've not had a good night's sleep due to the itch.
Apparently there are clinical trials for fatigue (check out the newsletter on LiverNorth website, Winter 2013) and also the itch that are about to start or what have. If you check out an NHS website and put 'clinical trials' after NHS in your search engine you should be able to fine out more information of anything that is going on if you are interested in doing so.
I know my view on PBC and what there is for it is that at present we have to accept what there is in urso and go off the bloods at intervals but I do think the way forward would be to find something to eradicate our system producing antibodies that keep the PBC going.
There's some good fatigue and autonomic dysfunction info here and it states there us no correlation
ncl.ac.uk/magres/research/l...
I have more info if you like xx
The links I have posted are to research by my specialists here in Newcastle (and other specialists of course). Despite sending in the info AND having a supporting letter from Julia Newton I still had to fight for my ESA. I suffer debilitating fatigue and my LFT's etc are ok. I also suffer cognitive dysfunction quite significantly.
Lots of good info can be found here
ncl.ac.uk/iah/staff/profile...
Xx
Thank you so much for this information Tessa. I am flattened with fatigue and memory/ concentration problems. My docs don't seem to believe me. I am getting so frustrated with having to explain over and over again. I have already done a series of CBT session and now i have been sent to counselling. I don't know what it is i have to do to make people believe that it is not all in my head and to work with me to help me to decide if i can return to work and maintain my job. If they keep saying it is in my head, i am never going to be able to make that decision.
OK - i think I have a bit of a bee in my bonnet!
I emailed NHS Choices to ask them about treatments that are available for the symptoms. I said that my understanding is that there is no treatment for the main symptoms that has been shown to be effective and has been approved for use in PBC.
They responded by saying the following:
"Thank you for contacting the NHS Choices Service Desk.
The page is correct - at the time of writing the article, no medicines are specifically recommended for treating the fatigue caused by PBC.
We'll be reviewing these pages later this year, at which point we'll check again if there are any new treatments and make any necessary updates to our pages.
Many thanks"
i have responded to their email as follows:
"I am not sure then if you have read the page. This is a direct quote from the page (emphasis added):
"There is no cure for PBC, but there are medicines that help relieve the symptoms and slow the progression of the condition"
As I said, my understanding is that there is no treatment for the symptoms that I mentioned. Fatigue and memory/ concentration problems are symptoms for a lot of patients. You have now confirmed that there are no medicines for treating these symptoms which would imply that the information on the page is at best misleading and at worst wrong. It is a problem because patients are inclined to think that perhaps doctors are not taking us seriously when the doctors tell us that there is no treatment available.
I think perhaps the page should be reviewed more quickly."
Hello Tessa i have just read the info from the DWP i just wonderd where they get there info from,i was told that it is possible to live past 20 yrs with PBC,according to the DWP are life span is 20 yrs,i feel a little worried now.
Don't worry lainey67 - there are many people here who have had PBC for a lot longer than 20 years and don't have much trouble with it. A lot of the information that is put out is out of date and irrelevant now and i would guess that is one such piece of information. Believe me, DWP are not famous for their up to date and relevant information.
Until the presence of AMA was linked with PBC, people often didn't get diagnosed til they were older so it was classed as a disease of middle aged women. That meant also that they were not treated until quite late in the progression of the disease. When you think about it, it must have been horrendous for those people - they would have been going to the docs with the same time symptoms as the rest of us and noone would have been able to tell them anything or worse, wouldnt have believed them
Nowadays, we are diagnosed much earlier and can start treatment much earlier - before there is much liver damage. All in all, our generation of PBCers should have better prospects for a long and itchy life 
Thank you SC49 you would think after 18 months i would be a little wiser,even thoe my lfts are back to normal i like many of us still feel totaly wiped out all the time.I still find it very hard to stay positive when i read negatives
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I have not posted in such a long time! I was informed I had PBC when I was 65. I have been taking Urso. now for 4 years.
PBC and Memory: How Have You Been Affected?
