Ok so all the tests for my liver were normal and I got tested again for AMA and it is positive. Reading about this I see that People with Raynaulds also test positive as do people with other things like rheumatoid arthritis, thyroid etc so does it mean it’s definitely PBC? Maybe I should get trusted for all the other things to know exactly what it is before taking meds. Is there anyone who has ester positive for M2 and not got PBC? Anyone who hasn’t ester positive and not having to take meds? Just want to do my research properly. Also my gp now says I don’t need to see her until next year for a yearly test but has mentioned the medication again
AMA M2: Ok so all the tests for my liver were... - PBC Foundation
I found this to answer your questions in more detail from the European Association for the Study of the liver, which is comprehensive, but may vary a bit from the American guidelines:
Thanks for sharing. I downloaded 39 pages today from EASL 2018 Liver Congress. Always a great referral source.
The material is really comprehensive & well organized. Much easier to grasp the concepts about pbc.
It is. I have EASL LiverTree™ app & I also signed up for emails. I also liked on fb & they are steadily sending info.
You can use the material to prep for your hepatologist appointment.
Exactly, lol! I’m actually waiting for a different hep now. This one is from Dallas, and as soon as the hospital is finished credentialising him, he’ll be at my hospital one day a week on contract & they are hoping to get him full time. I’m excited😀
What happened to the female hep?
Methodist Liver Institute doesn’t allow their hepatologists to treat self pay. This one I’m waiting for worked st Liver Institute several years then opened
private practice. Has done a lot of research & has presented his findings at International Liver conferences. Interesting man.
I believe positive ANA test can suggest Reynauds syndrome. Separate test from AMA. ANA Cascade tests for about 14 different things. RA & Sjogrens being in that cascade.
I am curious why you had a AMA rested a second time. I thought once you tested positive you would have it for life.
I wanted to make sure, second opinion as my GP has lost some tests so I waned to re test for everything. Everything else is now normal but the AMA M2 is positive. I am getting tests once a year and they have said as long as everything stays normal then no medication required as sometimes things never progress further.again I will go to specialist and my mum is going to take the same tests to see whether it comes positive for her too in December as they live abroad
Get copies of all the tests you take so you have it for future reference. This way if your GP ever loses the results again, at least you have it.
There are a % of AMA positive people who do not progress to have the condition. Monitoring is appropriate if it should ever change.
I have all the copies what I mean is my GP lost the bloods so the test never came through! Useless people hahaha
What do you mean about 0%? Do you mean AMA positive means it will always progress? This is so stressful in a way I wish I had never gone to the Dr that year as I wouldn’t have know any different and would not be worrying now. Does AMA M2 mean PBC? I thought it could mean other things too? Could you clarify? It seems there is a list of autoimmune diseases that come under this
I don’t know what the actual percentage is. It is meant to be interpreted as “there are some people with positive ama, without any other blood abnormalities” who do not go on to develop pbc.
That is crazy that they lost your blood!!!
That might be you. Hopefully that is your situation.
It is my understanding that The presence of AMA M2 along with a raised ALP is enough to diagnos PBC. In my case I had the raised AM M2 only with slightly elevated AST and ALT. I had a biopsy to confirm and it was then that I was diagnosed with PBC at an early stage and given Urso and told to never go off of it. The Alt and AST have dropped and are in the low end of the reference range. All my other blood work is fine. But I am told that PBC continues to progress but at a very slow speed when caught at an early stage. Some people stay at the same stage for 20 years. There is someone on this post who has a AMA and definitely does not have PBC but is checked regularly.
There are a few of us on this forum who have tested positive for AMA M2 but do not have any physical symptoms, eg puritis, and our LFT's remain normal.
Positive AMA M2 is not enough on its own to give a diagnosis of PBC, therefore a lucky few of us do not actually have a diagnosis of PBC. This is great, especially with insurance as with no firm diagnosis, our insurance is normal. With no diagnosis we do not take any medication.
Some of us including myself, still have annual blood tests to check LFT levels but a very small number have been in this situation so many years, that they have been told they don't even have to have the annual blood tests anymore.
PBC can be a very slow developing disease. If you are very lucky, it may never develop in your lifetime. It may be hard to relax about it all, especially when your annual blood tests come round, but try. Try not to google, try not to stress, maybe just try to live and enjoy life.
I too have Raynauds. Apparently if you have one auto-immune condition, you are more at risk of having another but it's not written in stone that you will, so don't worry too much about it. I also got tested for AMA M2 twice initially, but not again after that.
If you haven't already, get referred to a consultant, a heptologist or gastroenterologist. It is quite rare for a GP to have extensive knowledge of PBC. Certainly if your GP is talking about medication, you need that confirmed by an expert consultant. However, once you have seen a consultant, and your LFT's & symptoms remain normal, the following year you may only see a specialist liver nurse at the hospital, then the following year maybe a junior doctor, then you may be bounced back to your GP to continue the blood tests at your local GP's surgery.
I recommend you look for the posts by Gritty Reads as she explains it very well.
Also look at the PBC Foundation site, link at the top of the page.
Firstly loving your writer name BadPiglet!
Thank you so much, you answered everything I was wonsering. I will keep on top of things. This year all is fine so I will just relax. I was with a consultant in 2015 but now the results are normal I was told no need but to have yearly blood test to keep an eye on it. Did you have a MRI? I was thinking of asking for this just for extra peace of mind. My other scans came back normal I was told liver looks good
No, I didn't have an MRI or Fibroscan. Thought about it but have chosen not to pursue it - got other things to worry about!
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