Liver biyopsy showed stage 3 fibrosis. I'm 28 years old. My all elevated LFTs got back to normal ranges after 1.5 month i started using Urso 250mg (2*2). My doctor told me that this is a perfect progress so he didnt want to put me on corticosteroids.
LFTs are all back to normal but it doesnt keep me away from feeling some symthomps of this illness. Last couple of weeks i feel way too tired comparing before and i started to have skin bumps. I'm adding pics i would appreciate if you could check it out, i need some advice, why this could be and what should i do for this.
I started itching in early 2010 and by the end of the year had been diagnosed with PBC and started on urso (600mgs daily). My LFTs have come down but haven't as yet reached normal but saying this, I was informed that for someone with PBC they are within the normal range as we have a different scale to someone who hasn't got a liver condition.
I never had a biopsy as I had the AMA blood test that showed I had a positive reading and along with at the time 2 symptons, fatigue (long since vanished) and itching (still have at night) plus abnormal LFTs that gave diagnose.
I think what you meant to put was 'Stage 1' as that is when fibrosis occurs, it is liver scarring.
I personally do not go with stages as such, I just go from day-to-day how I am feeling and how the LFTs are doing at each blood repeat. I did have a scan back in 2010 that showed up a normal liver and surrounding organs and it was said the blood were showing a bit of inflammation at the time.
Unfortunately for someone with PBC fatigue is one of the symptons as it itching. Some get one of the other, others get both. I was working full-time 'flat out' back in 2009 and 2010 and I just shrugged the fatigue off as that. I thought the itching was something and nothing and would go but after a fortnight I started getting irritated with it I went to see a doctor and it all went from there.
I tend to rise early morn (around 6a.m. to 7) and I try to be on the go all the time if possible and then I try remain awake until around 11.30p.m. to midnight before retiring to bed. I tend to be itching by 11p.m. so if I can being tired and going to sleep do take priority for me.
I quit any additives in food that I had sometimes missed prior to diagnose, I don't have artificial sweetners if I can find out what is in foods/drinks and I try to eat natural. I would only take any OTC or prescription drugs now if I really needed to do so. Alcohol altho' you aren't going to be told not to have the odd glass, for me due to not being much of a drinker prior to 2010 I just stopped altogether after my first abnormal LFT.
Life is now for enjoying more outside of work as we never know what is round the corner.
(I'll check out your pictures and if I can input anything I'll respond again.)
Hi Burke0626, I was diagnosed at age 37 although the doc thought I probably had it for a few years prior. The itching was so unbearable I finally had to go in, nothing was working. I was always tired/fatiqued but I was a single mom of 6 and worked two jobs........so I never thought of anything being wrong. The blood tests ruled out Hepatitis A/B/C, they checked for a few other things and was negative all tests pointed to PBC, which nobody seemed to know alot about then. I was referred to a gastroenterologist and he did a liver biopsy, and I also was at stage 3 with fibrosis, that lasted about 16yrs, 2yrs ago I progressed to stage 4(end stage) w/cirhossis. I have had some other complications and been to see the transplant team a few times, but by the grace of God I am still here and thank Him each day. I know how fortunate I truly am, and I try to remember that on bad days or scary times, it actually keeps me pretty 'up' and happy each day. I am not sure about your bumps, but I do know all sorts of stuff happens to your skin, I have lots of red splotches on my arms, neck, face......from the veins, because they weaken. I think I am starting to develop those fatty deposit bumps under my eyes, eeeek!..oh well, there really are worse things in life, and just so you know, I thought that before all this PBC stuff, it just really comes in handy now You actually sound like you are doing pretty good too....thoughts and prayers, cyndy
Before I was diagnosed with PBC in 2007, I developed strange itchy bumps on my thigh and went to see my doctor about them. She didn't know what they were either and prescribed some cream, the name of which I forget. They disappeared but do return on occasion. I think they are part and parcel of this disease, but if you're worried about them or they cause you discomfort, go and see your GP.
Like Peridot, I was diagnosed with the AMA blood test, after unbearable itching drove me to seek medical help. I was put on Questran at first, but I really didn't take to it. At this time, I was under great stress caused by the family of my then, husband-to-be. I developed eczema... .yet another itch!
I think the thing to do is to try to remain positive and listen to your body. Rest whenever you can and have the odd drink...I certainly do! Best of luck and take care.
While URSO can return your LFT tests to "normal," unfortunately it appears it rarely improves the symptoms of PBC. This was something I found hard to take in to start with. PBC is an illness you have to learn to live.
Your skin bumps look like Eczema, I would go to your GP for a diagnosis.
It does seem that is the case after diagnosis and taking urso, the symptons of itching in particular don't seem to go away although they do improve somewhat as I have found. I know myself if there was a cure tomorrow to stop the immune system producing these antibodies that cause PBC I think the current symptons would still remain due to any damage to the bile ducts that are already there. BUT I think if there was this cure then I'd not bother about living the remainder of my life with what itch I have now knowing that PBC wouldn't be attempting to progress.
I don't actually call PBC an illness as such. I would rather say 'condition' myself. I don't feel ill just itchy at night. For some it can become problematic and then they get sick, others remain pretty much ok.
Yes you are perfectly right there, you do have to live with it. But for the itch I'd think I was perfectly normal like I did prior to starting with the itch in 2010. I am probably one of the fortunate ones that fatigue long since left me but that might have been more due to overworking full-time and a lot more than the 37hr week back in 2010 (was more like 50hrs). Plus taking even better care of oneself even if you thought you did helps considerably with PBC.
Thanks everyone for advices. I started to have liver issues back in 2008, that time i had yellowness, terrible itching ( i had scars all around my legs because of it) and some intestinal problems. GI followed my situation around 6 months, they made lots of analyses including autoimmune anticors which was all negative back than. They were even suspected the thing called “Fasciola Hepatica” aka liver fluke parasitic worm. At the end they came up with nothing and called it “Toxic Hepatitis”. Within some time my ALT-AST got back in to normal scale and GGT-ALP to 1.5x-2x high from 9x-10x high. My all itching were gone, i was not tired anymore and feeling almost perfect. So i didnt really care about that minimal rise. GGT – ALP were stable for like 3-4 years, never went to normal scale but never went too high either till spontaneous check up in 2013 July. GGT-ALP were 4x-5x high again and some changes in ALT-AST as well. Than they checked autoimmune anticors, it came out that i am ANA, C-ANCA, P-ANCA positive AMA negative. Than they made liver biyopsy it showed PBC symthomps.
I’m new to this disease, first 2 months were really difficult for me to digest it. Thanks God there is such a community, i have learned a lot here.
peridot, after i find out that i have this disease i also changed eating habbits, trying to eat as much as natural stuff, no additives, no alcohol. I think it is helping a lot.
sistergoldenhair, i also have a positive character, i always try to emphatize with other people. i think this is the only way which helps me understand the real value of what i have.
Once again thanks for advices on skin bumps, i will go and see my doc soon. I also want to apologize for any mistake in my language as it is not my main language. My best wishes for all,
I went to dermatologist about skin bumps, he diagnosed me with Lichen Planus which is autoimmune skin disease. He said this disease is very common with PBC.
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You actually sound like you are doing pretty good too....thoughts and prayers, cyndy
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Have any of you started itching when you started URSO?
