Autoimmune PBC

[shirley29485]

Hello everyone finally got a diagnosis of Autoimmune PBC. I am stage 3. have appoint with my specialist and will be putting me on URSO think that's the short spelling. I have Bronchiectasis and MAC on top of it..So my body is very busy with many things. I am trying to deal with it. I'm finding myself not emotional at all. Just feel as though there is finally a name for being so sick. I am asymptomatic fever, itching , dry eyes, and many other things. Can anyone give me any input on prognosis?

[Hidden]

sorry to hear it. I dont know much about PBC.

[skywalker]

Check out the PBC foundation that has best advise and support. Good luck.

[Yarnie]

Hi there, sorry to hear you diagnoses. I was diagnosed 10 years ago with PBC, I was 30. I didn't manage my condition very well and ended up last year having a transplant.

Thankfully I'm doing well, but my advice is take urso, rest and get in touch with the PBC foundation. They are an amazing organisation and a great support.

If your itching gets unbearable (I know how made it can get) ask your GP about Rifampacin. It's great for stopping itch!

Good luck to you and hope you get help you need. X

[shirley29485 in reply to Yarnie]

Thank you Yarnie I will be going to see them in a week to start treatment. I am stage 3 from what I have read at this stage the meds may or may not work..do you know anything about this?

[Yarnie in reply to shirley29485]

I personally couldn't take Urso, I felt much worse whilst I was on it. As a result PBC progressed quicker then I thought. Before I had my transplant, I was told of further treatments that have been developed which are showing good results. Good luck with treatment, sometimes there's a lot of trial and error before they find the right balance. Please keep us informed

[bestiebabe]

Hi, glad you have got a diagnosis. It does help to know there is a name for what you have been going through. I was diagnosed with PBC 25yrs ago and after having to explain many many times that it wasn't caused by alcohol I managed to get on with my life. Urso does help eventually with the itching the doctors may have to 'tweak' dosage a few times.

As you know it isn't something that can be cured but can be contained. I got help from PBC foundation who are a charity and they can send you information and you get their newsletter. You will find symptoms vary from season to season.

2 years ago I began to suffer more and I did end up on the transplant list. Not everyone does but 25yrs is a long time. In January this year I received my donation and have been coming on in leaps and bounds. I am 60yrs old and just wanted to give you some hope. If you ever need anyone to moan at,especially if you suffer what I call a 'brain fog' day just get in touch.

[shirley29485 in reply to bestiebabe]

What stage were you when you were diagnosed with it to start with? Do you know?

[bestiebabe in reply to shirley29485]

I can not remember sorry.... I know it seemed urso slowed progress down. Docs will get you throughby upping or lowering dose. At least now more people know about it...it was a neurologist who told me...... and he just said it's not parkinsons but I do know there is no cure for it.... great way of telling me!!!!!

[shirley29485 in reply to bestiebabe]

I know I was kind of prepared..ignored many years because of no insurance. So they have helped me get to stage 3..sucks hoping they slow it down somehow

[Bolly]

There is a Facebook group for those with AIH here facebook.com/groups/AIHorgUK/ and for those who dont like FB there is a support group website with forum here autoimmunehepatitis.org.uk/. There are members with overlap AIH/PBC and some very knowledgeable ones too. Sorry to hear your diagnosis, the Urso (Ursodeoxycholic acid) should work for the itching caused by a build up of bile (PBC symptom is blocked bile ducts). The main British Liver Trust website has lots of useful information on PBC including downloadable leaflets.

[shirley29485 in reply to Bolly]

Thank you so much for your input...will check out the groups right away.. thank you

[slck]

My son, age 25 has PSC (Primary Sclerosing Colangitis) and Ulcerative Colitis (UC). Although not the same as PBC, PSC is quite similar. He was diagnosed about a year and a half ago and with no cure available from conventional medicine, he has taken the route of controlling his condition primarily through non-conventional auto immune management strategies. These start with a change in diet to try to eliminate the antagonist agent that may be setting off the auto immune reaction. In many cases of auto immune diseases, that reaction can begin in the gut, and gluten and dairy are good places to start as possible causative agents, so he has eliminated both.

Dr. Burton Berkson in Las Cruces, NM has had much success in treating auto immune diseases with a combination of Low Dose Naltrexone (LDN), alpha lipoic acid (ALA), and a regimen of other vitamins and supplements. I would urge you to Google him and read his books on LDN and ALA. There is a video of his presentation at an NIH conference in 2009 that is worth viewing, even though it talks a lot about LDN and ALA in the treatment of cancers as well as auto immune diseases. There is a Yahoo LDN Group that you can join and it has lots of information about LDN, a drug that can help regulate your immune system to normal, or more normal function, and thus slow or eliminate the progression of the auto immune reaction. I would urge you to read as much as possible about this strategy to control your auto immune condition.

My son is doing fairly well, with his liver enzyme function values reduced, although still outside the normal range. He has just started LDN and am hopeful that it will put his disease on hold. Do not be surprised if your doctor, if he only considers conventional medical strategies and therapies, to not be supportive of LDN or possibly even diet or vitamins, as a good first step toward controlling your auto immune reaction. Unfortunately, that type of mainstream medicine reaction seems to be typical. With no real cure available from conventional medicine, I would urge you to do as much reading and consideration of alternative therapies as possible, and to take charge of your health care strategy, doing whatever seems reasonable and prudent to you.