Hello Everyone,
I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been experiencing when they first were diagnosed with PBC. I know from doing some research, that "intense" itching is mentioned as well as elevated LFTs especially the ALK Phos level and I was wondering what your LFTs were when you were first diagnosed and/or what symptoms you were having if any.
My ALP was elevated but not a lot. I was AMA positive and had high gttp so altogether, that's PBC and about nothing else. But none of my numbers were alarmingly high. However, my symptoms were off the charts. The itch was literally driving me mad. It took over a year for a definitive diagnosis as the severity of the physical symptoms did not match the numbers. I took choly pwder (yuck) for itch and it helped almost immediately. I respondedvery well to urso and am, for the most part, symptom free and numbers in normal range. A fibroscan showed no liver damage. Pretty lucky overall. I was 64 at diagnosis.
What is choly powder and where do you get it
Cholystyramine powder. Dr prescribed. It removes bile acids which eases itch. You mix it with a liquid. Very chalky tasting, pretty awful actually but it saved my sanity. If you take urso, it must be spaced a significant time away from when you take it. My itch is way better so I no longer use it but it was quite necessary for a bit
I was wondering if most healthcare facilities have a "fibroscan"? as my GI doctor didnt say anything about getting one and I didnt know if thats something thats highly recommended when first diagnosed.
Unsure. I am in US and directly asked my liver specialist for it and he agreed it was a good way to ascertain if there was liver scarring, Not sure if he would have brought it up if I hadn't. My GI guy sent me to the hepatologist because he (GI) was not familiar enough with PBC to want to deal with it.
I asked about the fibroscan, liver doctor said, they have a machine right there so we did one as a baseline. He was nice enough to explain how it works and went over the results with me too.
I’ve done a few since then just for peace of mind. Did one last March.
I think it depends on your progression of pbc and if maybe your bloodwork suggests it would be helpful to have one.
I asked about it because I learned about it on this site. I also do liver sonograms as well.
I think most major medical facilities have fibroscan machines in the GI department.
I had itching for over a decade to which drs said my skin was drying out because I was going toward 40 lol. Then when switching drs I asked about running a liver panel because of a drug I had been on and the old dr never ran the panel. My ALP was 100 times normal so off to the GI specialist. First question was do you itch? and he said PBC. Lots of labs to rule out other things and he thought possible AIH crossover but early stage. Fast forward a year I was losing insurance so asked for biopsy while I still had it. Stage 4 PBC with stage 2 cirrhosis and no AIH. They then figured I had had PBC 10-20 years I was just turning 49.
I was diagnosed 2013 (age 31) after my routine LFT test returned my ALT AST numbers in the 1200s/1300s. I had itching on my both legs around my ankels for years before that but never thought it was due to my liver condition. Also initially doctors thought my LFT levels were high because I had alcoholic fatty liver ( I didn't drink massively at the time. Few beers every month and was bit overweight by 10 kg than my ideal weight per height)
Anyways, even after losing 10 kgs and changing my diet didn't help with the LFT levels, I went to see a specialist and he had me do liver biopsy. It showed bit of scarring with Fibroscan score of 2 so the specialist diagnosed me with PBC and put me on Urso. Within weeks I was in the 100s and in few months I was back to normal in 40s for both my ALT and AST numbers. Itching went away, LFTs been stable since then but I still have bit yellowish eyes as my bilurubin levels haven't returned to normal.
One constant sympton all these years though is my fatigue. I have some great days and some really bad ones but I have learned to cope with them rather than fight and feel frustrated. Hope that helps.
Pbclimbu, you had some HIGH ALT/AST numbers, I think the highest my ALT has ever been is under 400 something and my AST and ALT numbers have been high a few times but normal other times but the ALK Phos has been higher than normal for a while now. I definitely know what you mean by good and bad days and fatique as intially I related this to getting older until I found out I had blood cancer (MPN) and then of course a new diagnosis of PBC. 
Welcome. I come to this site when I need a little reassurance on this disease we're all dealing with. Diagnosed in 2019ish, I went to my GP because of being so tired and my back was always itchy. I also had very pale stools, almost white. I was sent to a Hep Dr. when liver tests were high. Started Urso, doing pretty good. Good days mostly, but the bad days are doable now that meds are working. Stage 1 very, minor scorssis. I changed my diet drastically. I try to only eat single ingredient foods. Chicken, eggs, veggies, lots of fruit, raw almonds, oatmeal. I do eat a yogurt every morning. Low fat high protein stuff, and 3 to 4 babybel light cheese servings. I also have osteoporosis from PBC. Watch for that too. I'm 62 years old, and I am grateful to this site and the people that respond to our questions, ideas and concerns. Early on another symptom I had and still do have, is I get very tan, very fast, and stay tan. I limit my time in the afternoon sun!
Laurie =)
TanGram,
Getting and staying tan sounds positive I didnt know PBC could cause osteoporosis thanks for sharing that information.
Hi, PBC can make it difficult for the body to absorb fat soluable vitamins... ADEK. My Dr has always ordered a bone density test every few years. I was diagnosed in 2003, I was 40... I presented with jaundice, no other real symptoms besides a bit if itching. My numbers were crazy though, AMA 5000+, ALT/AST 600-800, Alk Phos high too, but don't remember exactly. I know my cholesterol was 1200! First biopsy showed stage 2/3, but I was asymptomatic besides the jaundice. It took a year or more to get under control and probably 3-4 to get everything exactly where it belongs, but I have remained symptom free and my last several biopsies & fibroscans show little to no evidence of disease! I have had a reduction of the damage, which back when I was diagnosed I did not think was possible, my Dr said we have learned a lot in the last 20 years.
Wow, Mambo, your AMA was off the charts as well as your ALT/AST and Cholesterol. It was interesting to note that other than jaundice, you were asymptomatic except for your bloodwork of course. That is where I am having a hard time with this new diagnosis as essentially, I am not having any symptoms other than my bloodwork high Alk phos never above 400 and a positive AMA. Although I am less energetic then I used to be, I just chalked it up to age (65) and my recent diagnosis of blood cancer. I am glad to hear that your liveris now on the mend
My routine LFTs were slightly elevated and the primary care doctor sent me to a liver specialist. Likely I had it way before then because my prior primary care doctor thought I had a fatty liver and didn't further investigate. When I switched doctors, the new doctor said we have to investigate.
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