PBC Foundation
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Is it time?

Hello everyone. Hoping you are doing well.

I have some concerns.

I have a colourful health history to say the least.

Hypothyroid, Addison’s disease, Sjogren’s, Systemic Lupus Eyrethrmutosis, IgA deficiency, osteperosis, arthritis, fibromyalgia and PBC.

It’s allot, but I know I am not alone in this as many of us carry a significant basket of

diagnosis all due to our wonky immune system.

Amazingly I do pretty well and can enjoy life for the most part.

I write today about the PBC. I don’t know much about it. It was noticed back in 2003 when I was being investigated for the Lupus diagnosis.

I saw a hepitologist in Toronto about the PBC. She explained the problem was fatty liver disease brought on by years of prednisone steroid use.

I had thorough ultrasounds to rule out cancer in my liver.

I had much blood work. My enzymes seemed always to be slightly elevated and so I was told that this is a serious disease that would over time become a problem that would have to be delt with. I was told that it could be 10 to 15 years before that day would come. I was given no medications at that time.

Since then I have left that hospital after tiring of the 2 hour plus drive to the city.

I came to Kingston Ontario in 2006 even though I was warned that they did not have a hepitologist. My file followed me and I was tested and my file studied.

I was told that my liver did show antibodies but that it was functioning fine and was not a problem I had to continue to be concerned with at the moment.

That regular periodic liver blood work was all that was required.

I could not believe it! I had been told such a scared different story by the hepitologist for years every couple of months....I remember my husband and I leaving that office visit in total disbelief! We first stared at each other very gingerly about the new information, then we began to walk down the hall feeling confused and a bit questionable but so hopeful it was true. Then was began grinning so big and almost dancing down the hall....too funny.....I will never understand it.

But it has been fourteen years and the past few years my health has definetly changed some. My liver enzymes have be o e routinely elevated but it seems only slightly, from 45 to 75 the last times. My nurse practitioner is not at all concerned stating that in order to worry my enzymes would have to be 10X higher than that.

But my rheumatologist who is wonderful called and had me repeat the blood work again just recently. I don’t know what she is thinking nor have I heard ba k from her yet but it takes some time for her to receive the results and to get to my particular case

She is very busy but she has never let me down.

But I am confused, because I am liver sick.....nausea, itchy, can’t eat very well, my muscles and bones ache, and oh my Lord the fatigue! I just am so worn out. I can’t do anything. I also notice allot of these weird acne like yellow spots coming all up around my eyes and face. Not nice. What IS that?!

We just went through the Holiday season, where the foods are richer and more plentiful and it is often hard to say no to a hostess who has worked so hard preparing a beautiful buffet....is it possible that a little extra cheese or fat in my diet at that time could aggravate the liver and cause temporary symptoms I wonder?

Thank you so much for considering this post from a complete stranger, but I so appreciate any direction you can give me. MeandPBC?

10 Replies
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Sorry about all your symptoms. You really need to see a hepatologist as soon as possible. Tell them it is urgent. Really...really imperative for doctor to address.

You should have been on urso once they diagnosed the pbc even if your enzymes were only slightly elevated.

Hope you see a hepatologist very soon!

Click below into your browser. All the symptoms for pbc are there for you to review.

Please ignore all that other stuff about liver cleanses etc. Just read for symptoms. I would not do anything it suggests unless your hepatologist approves.

healthprep.com/kidney-liver...

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You need to see a hepatologist asap

You should be on urso

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The little white bumps are probably xanthelasma which is fatty deposits. It may be worth having your cholesterol checked.

I would also suggest you speak to your doctors about why you've never been given URSO as treatment for your PBC. there could be genuine reasons why, however you do need to know, then if there was no reason perhaps get started on it.

You can also join the PBC foundation the link is on this page you will get up to date information about PBC and this will help you when asking the doctors questions about your care.

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I agree with all the other comments. If you have AMAs and your liver enzymes have been elevated, then you should have been specifically checked for PBC. If there were any doubts you should probably have been given a liver biopsy (scans are not enough, you need your biliary tubules to be examined at micro-level) for a definitive check for PBC. If you have AMAs- M2 (the sub-type of AMA that's linked to PBC) and elevated liver functions typical of PBc then, yes, you should have been taking Urso. I would raise hell, and get it checked asap.

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Thank you to everyone, I will try again. I have tried in the past but there seems to be no concern from my GP.

What are AMAs? Thanks

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When I was diagnosed, I immediately started researching. AMA’ are Antimitochondrial antibodies that attack your system. I think you would gain a lot of knowledge if you research. You just have to careful of the sites you choose. Liver Foundation is a great place to search.

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I have saved links from Mayo Clinic as well. They are a trusted source.

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As gwillistexas has said, AMA stands for anitimitochondrial antibodies.

These are autoimmune antibodies that can attack our system. If your liver antibodies were noticed years ago, and you have been treated for lupus, then really you should have been checked for all possible liver conditions - especially for PBC as AMAs are a big indicator for PBC (though on their own, they don't mean you have PBC, you have to have rising liver function tests as well). You should also have been checked for all autoimmune conditions. There are different sub-types of AMA, and AMA-M2 is the one that codes for PBC, while another one (can't remember the sub-type number ... 5?) AMA-M? codes for Lupus. It may still be that you don't have PBc, as the AMA you had might have only linked to the Lupus, but if you are having rising liver function readings, then they should be checking you more carefully. I would have thought a liver biopsy would be a good idea.

Do look at the 'PBC Foundation' website - link at top of page. Their advisors are great, plus their site has loads of info. You may have to join - to see it all - but it's free to join and they are so lovely and supportive.

Take care and let us know how you get on.

Gritty

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Hi Tufffymason, hope you are feeling a bit better. I also have a list of auto immune issues, not quite the same diagnosis(s) as you, but I do have a rheumatologist that is very helpful-- I have a Hepatologist at a local transplant hospital clinic ( a lot of turnover in staff lately-- bit disquieting) . Perhaps your rheumatologist might be able to recommend a Gastroenterologist in your area that you can consult. There is no good reason that your GP should not refer you to a local gastroenterologist , who quite frankly will have a greater knowledge of liver issues than your nurse practitioner ( I say this due to your complicated medical history & large number of auto immune issues, don't mean to disparage nurse practitioner or GP) He will also be able to review your history & run tests more specific to your liver and probably get you in to see a Hepatologist if the problem is your liver. If you are still in the Kingston area, have you thought about taking the train to Toronto? ( if you're referred to Dr. there & don't want to drive there) I have family in Ontario , am aware of the problems in appointments with specialists there & I understand how referrals may have to go thru GP--- it's time to insist on being referred ( don't know if your rheumatologist can do referrals, please ask her if she can). I have also noticed that holiday times can be associated with a 'flare up' of symptoms--- I still go see my doctors to make sure. Try to follow a low fat, mild Mediterranean type diet whilst you wait to be seen.Good luck!

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Thanks so much everyone. I am sure there is something going on and it is time for a re-visit. My nausea has settled but it’s because I simply can’t eat.

That in it’s self is wearing me out. The sjogren’s is real bad, sooo dry. I wonder is it possible that along with my mouth, sinus, lungs being so dry so is everything else....stomach doesn’t work, GI tract so why not Gut issues.

Thick secretions....

I already have a motility problem then add ridiculous dryness and a I would expect the tubular in my liver even gallbladder get clogged right?

It’s winter here, the heat is on, I have humidifiers runn8ng non stop but no matter what one does winter and cold is terribly dry.

Maybe that is the problem. Still it needs to be investigated. I would have hoped I would have gotten a call from my rheumy by now...so I will call myself today.

As far as the AMA stuff....in the beginning of all my diagnosis they did testing and I am antiRO antiLA and antiSM and I also have IgA and IgG issues. Not sure if that is anything to do with AMAs. All of the above were associated withLups and Sjogrens. I do know something was seen in the initial blood work that indicated to the specialist at the time that I needed to be referred to a hepitologist.

I have found a hepitologist via rated up around Woodbridge Ontario so I will ask for a referral to her. She also has PBC and her patients seem to love her.

Well thanks again group, I find my self once again endebted to a mix of experience and kindness, thanks.

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