Primary Biliary Cirrhosis is an autoimmune disease and I'm not even sure how much the hepatologist does as far as maintenance. The liver forums can be kind of hard to deal with because there are some really really really sick people dying and a lot of transplants and such and I don't know, I found it hard. I've not had much success with replies to posts. I just don't seem to be sick enough for them. Then the autoimmune problems that accompany our respective diseases are out of the realm and they take different meds too. You will likely be on some of the same meds, I think, the immunosuppressants. I recently found a decent site and realized I have every problem listed that goes with PBC and I'm wondering if anyone tested me for it (duh!). Fatty liver isn't much different, just doesn't effect the bile ducts but the rest of the liver, the big brown part. Anyway, it was the mayoclinic site and they do have an ask a specialist. A good liver forum outside of the healing well one is called Hepatitis Neighborhood and many people there have other liver problems and they have live chats with state of the art hepatologists and they get really technical sometimes and there are nurses and stuff there. I would definitely eventually want a biopsy, but I would make them do some less invasive stuff first to rule out any problems the biopsy doesn't show. After all, they only get a needle size slice or slices if they do multiples and it hurts and is risky, so I would have them check your liver out to make sure you don't have any lumps on it or any other abnormalcies of the blood vessels or bile ducts or stones. MRIs and ultrasounds are good to look at the whole thing and there are special tests to check out the bile ducts to judge the amount of scarring. I dont' see how a regular biopsy would tell them that in a good way. It may show them if cirrhosis has spread or if you have fatty liver or infection, but I dont' understand how the biopsy works. There is an alternate biopsy method which goes through the bile ducts like a scope thing and that would make sense, but I'm not a hepatologist, but you might ask for some clarification of what they expect to find with the biopsy and see if they can't do some less invasive stuff first so that when they biopsy, they get any questionable areas. The biopsy will hurt, I would suggest taking three days off instead of the one, so that you can lay down on your side and let it heal for sure, because we have other problems and it might not clot up as fast and heal as fast and it just plain hurts and I would get pain meds after. You need to becareful getting out of the car and into the house and to bed afterward, someone needs to hold your arm. I fell after mine and it could have hemorrhaged. I was lucky. Anyway, they can't give you anesthesia when they do the regular in the side biopsy because you have to help them by breathing. They may give you a valium and local but it still feels like what it is. I've had at least four that I can remember, maybe five and will probably end up having more as my disease progresses. Its just something you get used to. I always ask for a shot afterward because I won't stay still otherwise and get pain meds because I had to suffer through it without any, so I feel I should get something to keep me down and heal. Make sure you really trust the doc doing this and ask how many he has done. If you feel comfortable that he does them all the time, then that's fine. A hepatologist will do more of them. If they want to do an ultrasound guided biopsy, it can be a sign the doc is not comfortable doing it, or just means he want's to pick and choose where he gets tissue from. Anyway, the only one I ever had guided, I could tell the doc was not as experienced, he is primarily gi, and he was slower than a hepatologist so it was more painful. I will get my next biopsy from my fancy hepatologist. You don't have to leave here, I hate to say it but you may have secondary lupus like me, caused by the liver disease, so that's why your anti-ds-dna may be negative, because you didn't inherit lupus, you developed it. As liver disease progresses you can develop anti-ds-dna btw. I would say please do the ultrasound and MRI or other similar test before the biopsy. It will give the docs better info to be more successful with the biopsy. You wouldn't want them to have to do it twice or miss your liver. After all, they just jam a needle in your side and can't see anything.
Diet is really important with liver disease and carbs are killers, though fats often aren't as bad as you might think. You might try to see if the carbs bother you, or the fats do. If the carbs are ok, then maybe it is bile duct related, since fats aggravate like gallbladder and bile problems, if fats are ok and carbs bother you, maybe you have fatty liver like me. It sounds like your rheumie is making a best guess right now and you really need to see a hepatologist. It is likely he will start with bloodwork and an ultrasound and go from there. Fatty liver is a lousy disease, especially when it progresses alot. If your alk phos is low, perhaps you have acute non-alcoholic fatty liver, but he may be looking at the CREST, which is common with PBC and anti-mitochondrial antibodies, and smooth muscle antibodies all of which are indicative of PBC or autoimmune hepatitis. your alk phos might not be elevated now because it is not that bad right now. Are you jaundiced? It can be hard to tell, you need to look under your tongue and at your eyeballs. If they are yellow then you are jaundiced. You need good lighting for that too. I seldom get jaudiced (back up of bile due to bile duct inflammation or scarring) because my bile ducts are not yet effected. Some people do get jaundiced from backup of bile due to inflammation of the other part of the liver, but even in acute disease, I was never really badly jaundiced until now. You can get stones too, and gallstones can cause some problems. I think a good hepatologist should sort all that out. I would take the rheumies dx with a grain of salt until the hepatologist runs all his tests and procedures on you. Well, I wish so much for you that you are ok and that if you do have PBC, they caught it early so you can avoid damage, the prognosis is good if caught early and treated, there is no lifespan shortening according to mayo. My dad's liver is really bad and he still drinks occasionally and he is seventy and in pretty great shape and exercses alot and stuff, but he is being treated for his fatty liver and following a diet. He shouldn't drink. I don't drink, follow my diet and take my meds and my liver enzymes are normal and have been for a while. Well, I will keep you in my prayers. Here's the mayo link: http://www.mayoclinic.com/health/primary-biliary-cirrhosis/DS00604/DSECTION=1
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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