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strange PBC , LFT back to normal before starting Urso- anyone with similar experience?

Tramezzini profile image
11 Replies

I’m 31  and have had raised ALT on and off and GGT (ever since my first pregnancy ) (GGT highest 98 and alt highest 37) and a bit elevated cholesterol,no scaring of the liver (did a fibroscan) , every where i have looked it says your ALP level will decrease if Ursofalk is working. My ALP has never been high. I was over weight and obese due to pregnancy.I changed my diet, to no junk food, no sugar and sweets, no takeaway at all for one month And within One month my liver tests has gone back to really good numbers,  all blood counts are well and normal. No cholesterol . I was diagnosed 30.11.2022 and i have been on urso for 1 month.Could it perhaps be NAFL that i also have that triggers AMA? (I have mild fatty liver and some sludge in my gallbladder seen on fibroscan 30.Nov.2022)Is this PBC, or NAFL or something else, How will i know if my liver tests are stable and the medication is working to prevent liver scarring? Should I treat myself with Urso or how can i find our what this really is?My AMA Was 1:80 titre- is there other tests to be 100% sure it is PBC or NAFL etc i can do?

i have reached out to different specialists and they are not sure, one said might be or might not, two other said urso wont have any affect on you yet, is not URSO supposed to help prevent?

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Tramezzini
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11 Replies
Zelda5 profile image
Zelda5

Maybe it's the fatty liver that was driving your Alt and maybe the Urso helped too. Did they do a biopsy on you? There is some folks with Ama that never go on to develop PBC. Im not sure all experts agree. Mayo clinic says that it rarely occurs in other liver disorders.

Tramezzini profile image
Tramezzini in reply to Zelda5

I was thinking the same thing, but they don’t agree. 2 Specialist said you don’t have to take urso now if you don’t want to. But i am not scared if I don’t that it might spike up?

They are saying it is 90% PBC if you have AMA+, it is so odd. My bile was still okay last time i checked on the ultrasound, but i will have an other one in May to see how the fatty liver has gone.

No one has had PBC in my family .

Zelda5 profile image
Zelda5 in reply to Tramezzini

I'm kind of in a similar situation. I have fatty liver and a positive Ama M2, I had a biopsy many years ago and it didn't show any signs of PBC. Last year though, I had started getting elevations in my Alp. But it wasnt greatly elevated, about 145 about 25 points over range. He thinks it could still be the fatty liver causing it and he wanted me to lose weight and retest in a few months. I asked another HEPA and he said the only way to know for sure is a biopsy. He said the biopsy should include two passes with 16 gauge needle, (if memory serves me right). I'm sure they only did one pass last time and PBC in early stages can be patchy. I may ask for another one to assess it again and also see what percentage of fat is in my liver. Good luck.

gwillistexas profile image
gwillistexas

good morning. In reference to your positive AMA, my titer was 1:60. I was referred to a rheumatologist who tested for other autoimmune conditions which were positive.

Tramezzini profile image
Tramezzini in reply to gwillistexas

did you have PBC also and what else if you don’t mind me asking?

Pamela4475 profile image
Pamela4475 in reply to gwillistexas

that’s the proper way and there is a send out blood test done by my rheumatologist for pbc and it’s very reliable

gwillistexas profile image
gwillistexas

yes I have PBC. I have a very good internist who sent a load of labs to a pathological lab when my Alk phos was elevated. I also have Raynauds, limited schleroderma and crest syndrome. My rheumatologist sees me every 6 months to make sure I’ve developed nothing else

Tramezzini profile image
Tramezzini in reply to gwillistexas

glad to hear you are being taken care of.

gwillistexas profile image
gwillistexas in reply to Tramezzini

thank you. I have a very good group of drs.

gwillistexas profile image
gwillistexas in reply to gwillistexas

did your dr test your ANA as well? Mine was positive with a speckled pattern. That’s how my schleroderma was confirmed.

gwillistexas profile image
gwillistexas in reply to gwillistexas

I meant pathology lab, not pathological, lol! Been a long week…

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