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THOSE IN STAGE 3 PBC ANYONE EXPERIENCING A BIT MORE NAUSEA AT VARIOUS TIMES NOT ASSOCIATED WITH EATING AND/OR DRINKING LIQUIDS?

I was dx'd Stage 1 in 2001 via biopsy; Stage 2 in 2011 via biopsy; Stage 3 in Sept. 2017 via Elastography.

Am experiencing a slightly, only slightly, nausea at various times not associated with eating and/or drinking liquids than I ever did in the last two stages. I do have irritable bowel syndrome with both constipation and diarrhea as one of my other many ailments, and it usually kicked off by something I ingest, either solid foods or liquids. Occasionally it begins on "its own".

This "new" nausea feeling is solely based on its being perpetuated singly. At "odd" times, for me.

I only have had right upper quadrant pain just prior to being diagnosed in 2001; never to this date afterward. I suffer itching only at night and it is not all that frequent. So I really have not had many of the symptoms others with PBC are suffering, i.e. esophageal varices, ascities, or more.

I am a female 150 lbs.

I have been on Ursodiol 300 mg, 2 in a.m., 1 in p.m. for 17 years. I will take that back a bit: Was on 4 a day when I was 50 lbs. heavier, years 2001 to middle of 2016. Then cut back middle of 2016 to present to 3 a day.

Please respond in this venue if there are others out there who are experiencing this little phenomenon.

Kathleen in Ohio, age 73

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Hi

Can I ask do you mean fibroscan when you said stage 3 by elastography and if so what was your score

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Reply as to if a fibroscan is elastography: To my understanding, yes. However, the fibroscan, as it is known, has been around, I THINK for awhile - the elastography I am told is brand new and gives far more "pictures" than what doctors and technicians giving the scan than ever before. In fact, it is so brand new, Medicare did not even have a code for it, and the charge was something like $110 because they didn't know how to assess the dollar value on it. Also, technicians taking those pictures are so new to it, and the gastros/hepas they give the pictures to are so brand new to it. At least this is what I was told just prior to taking it. I believe it is a glorified fibroscan, giving many more pictures, angles, readings on the actual cirrhosis and hardness we have.

Score? I never received one; however, the description read "moderate to severe" which scared the beegeebers out of me ..... have not seen my gastro yet; have had much stress on me with a lot I won't go into here, my husband had total knee replacement, and I became a caregiver for the first time in my life. I had to cancel a colonoscopy for Dec. 21 and was scheduled to meet with my gastro right after that and could not. The Holidays are upon us, and I plan to call his office and set up the colonoscopy again for February; husband is in out-patient rehabilitation three times week, and we are busy with that a bit in January.

Regarding a score, I will ask him. He has not been too big on bearing me down with any numbers - I always liken keeping on top of your numbers, i.e. liver enzymes, is like taking your weight every day, up one pound one day, down two the next. Another thing, I have learned recently from an assistant to my primary who worked at a medical college hospital and worked with later-stage liver patients for many years (i.e. ready for transplant) that my bilirubin looks quite good, which is one of the major ones they look at. My gastro, just prior to the elastography, like a couple months before, verbally said I was in a "proper" area liver-enzyme-wise for Stage 2 - and then, I found out I'm in 3 - - - This is something I will discuss in detail with him. In another sense, my primary's assistant told me (and so did the gastro) that your enzymes can be at a, say, one level, and your staging can reflect another. Confusing, to say the least.

I will remember your post and report back re the score. My emphasis right now is to continue with good diet (mostly a vegetarian now - no red meat - no liquor, of course, no wine, no beer, lots of water, fruit, 2% Lactaid (am lactose intolerant) - and only maintain those medications which are crucial to my heart, diabetes, irritable bowel syndrome, which is major in my life, cholesterol, high blood pressure, and of course, my liver, which is Ursodiol 300 mg 2 in a.m./1 in p.m. I maintain a good weight now also. Also staying away from chemicals as much as possible. I am still learning. Have known about, and been medicated for, my PBC for 17 years now.

.

Kathleen in Ohio, 73, Stage 3 now

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Hi i have nausea frequently everyday and most mornngs i wake up with it. I am stage 2 diagnosed 1.5 years ago i am 57 i have terrible liver area pain my doctor said PBC doesnt cause symptoms at early stage like i am in. I think i am going to print off the symptoms listed on the Liver Foundations website and tell her to read ablut the symptoms. Do you have any other autoimmune diseases?

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