Hello everyone. My name is Bogdan, I am from Romania, I am 34 years old and I have 2 little children. I just discovered this AMA which unfortunately is positive. I read thousands articles in those few days trying to find something positive about that.
I want to thank everyone of you about nice topics, full of hope and positive thinking. Here I found my hope.... My next step according to my consultant is to have the biopsy.
From 1 year ago I had my AST above limit around 80.
Now I try to see the positive part of this because I consider that I had luck discovering this AMA now when hopefully I am in early stage of PBC or I don't have it yet installed. I am symptoms free and I hope to keep it like that.
My personal fight has just begun and I hope to be here positive like you many years from now!
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spy0n
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It's best to ask a Hepatologist who has good knowledge of, or special interest in PBC if you can. I have seen the same 3 criteria, but ALP / GGT are not the only indicators that give information about the liver, and ALP is not highly specific. It is also possible to have AMA without developing PBC.
If it's any help, I was shown positive for AMA in 2003 but not declared to have PBC until last year. I was careful to question my consultant about this because of travel insurance. The only change now is higher ALP and GGT (other blood tests were normal, which fits for PBC). Just 3 months on urso has brought these back to normal. The other test he told me was relevant was bilirubin which apparently is the best predictor of the progression of PBC. I don't seem to have much in the way of symptoms luckily so that's 13 years already without undue problems. I know that not everyone is so lucky but take heart, it may be a long time before it becomes an issue for you.
Good to know that are some cases where PBC wasn't active since the beginning. May I ask you if you changed your lifestyle from 2003. Did you take any vitamins or other stuff for the liver to keep it healthy in this period? Thanks!
Like many people I read around the topic and my job allowed me to access original research in medical journals. At that time the benefit of urso was more doubtful. At that time it was claimed that it improved test results but there was no conclusive evidence that it actually delayed time to transplant or indeed made any difference to symptoms. On those grounds, I rejected taking it just because of raised AMAs and continued just with annual checks. By my own choice, I continued to drink alcohol and enjoy life as before. My test results became elevated about 18 months ago, so was monitored more regularly. At that time I was asked to minimise the alcohol but that was because it can affect these results negatively and not give a true measure. So it wasn't the wine; t was PBC. I updated myself on the research and subsequent studies now explain that people can respond differently to Urso. Those who respond, do see a delay in progression, but for some others it doesn't work. What is still unclear to me is how they work out responders from non-responders. Also, I'm still unsure about how much it might delay PBC progression.
Sorry, I've gone on a bit, but in short, I didn't change anything or add anything to my lifestyle - and apart from taking Urso, I still haven't.
Your attitude is great! Keep it up...there is hope and I believe people are beginning to hear more about this disease. I hope that will precipitate more research. Just a thought....I think the medical community is more likely to insist on a biopsy if the patient is male (like my husband), since this is a disease found primarily in females. The blood work showed PBC to be likely, but the biopsy results confirmed it, even though the doc stated right on the biopsy results that this is primarily a disease women get. Our gastroenterologist is great though, and has other patients with this disease. Knowledge is power!
Yeah is true my gastroenterologist was very surprised about the result because the fact I am male, young and I think also that in Romania is quite rare this disease. He almost suggested me to repeat the blood tests.. He said that he want to be 100% sure of diagnostic because of my age...We'll see.. I also want to know the status of my liver.
I have one more question about Urso. Let say that I don't have the PBC yet (in the best case scenario)...do you know if is recommended to take urso to prevent it?
My understanding is that Urso replaces the bile acid that the liver stops being able to release once the bile ducts are damaged/destroyed due to the PBC. That is a simplistic explanation but Urso cannot cure the disease, only stabilize it. We currently do not have a cure, nor a preventative. Your doctor will be the best judge of what to give you, I hope. He seems proactive, and that is good. Many docs are unaware of the disease, so education is needed for them too.
Urso has stabilized my husband's liver enzyme counts, thank goodness, because he was not diagnosed until stage 3/4. But the Urso does nothing to help with his fatigue, which is the hardest part for him. And a side effect of the medicine can be diarrhea and cramps, which he struggles with. All in all, his doc is pleased with how the meds are working, but follows up regularly with blood work, fibroscans and ultrasounds. If you don't get answers from your doc, you can certainly look for another opinion. We had to do that in order to get a diagnosis!
Hi Bogdan, sorry for your diagnosis...I'm also from Romania and I'm very interested to contact you, in order to share some "experience"... I'll put my phone number here and maybe you call me to discuss a little bit... Are you from Bucharest? my mobile 0725516644, thank you very much!
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Positive AMA went down to normal
Fluctuating AMA positive, normal LFTs, raised IgM and ANA
How many of you have a positive AMA?
