How come

[Batatis]

Morning fatigue still persists despite negative AMA result?

AMA is now negative, will it be positive the next test?

[elpida]

Hi Batatis

Did you have a positive AMA before?

This might be of interest for you :

Question

Is it "normal" for Actigall/URSO to reduce the anti-mitochondrial antibodies?

Answer

We still do not know the precise role of anti-mitochondrial antibodies in PBC. At this time, they are considered a specific marker for PBC but there is no evidence to suggest that the titers vary with disease stage. In fact, AMA positive and negative patients with PBC have a similar disease process. Also, AMA are found in the serum of 70% of patients with PBC following liver transplantation, but only a proportion of these patients develop recurrent PBC in the new liver.

With regard to treatment, AMA levels may fall with global improvement in the disease process but it is not known why. So, patients taking Actigall/URSO can have decreased AMA but this is not necessarily a universal finding.

[GrittyReads]

Yes, agree with Chrissy14, can you tell us a little more?

Was your AMA test ever +ve? Have you had any of the other medically recognised tests for PBC, that is, liver function tests that are abnormal, and a liver biopsy? (For a formal diagnosis of PBC you really need at least 2 out of 3 of these tests to be +ve ). You can also ask for a fibroscan; and/or a very detailed ultrasound of the liver and associated organs; orMRCP scan; or even an MRI.

They should be doing liver function tests regularly if there is any real concern, eg one or more of the above diagnostic criteria, plus symptoms.

Also, have they investigated for other cause of the fatigue? Lots of conditions - especially other autoimmune conditions - have fatigue as a symptom. They should be testing for other things if you are definitely not PBC ... in fact they should test for other conditions if you are PBC - full stop - as people with one autoimmune condition should be checked for others, especially thyroid issues, sjorgans, etc.

Also agree with Chrissy about titer level

I would also like to point out that just having AMAs does not necessarily mean you have PBC. 95% of people with PBC may have +ve AMA, but this is not the same as saying that 95% of people with AMAs have got PBC (which is what some websites say); some people just have the antibody - lots of people have the rheumatoid arthritis antibody, but never get RA, if everybody was tested for the RA factor - and then treated - health services would be quickly overwhelmed.

NB just seen you've posted on this before with more info. Sorry to ask you to repeat, but I have not seen your earlier posts - it helps to give links (or repeat info) as a lot of people on the site, (who could give invaluable advice) don't visit every day, and don't check back through posts they've missed. I'll try to go back and reread your stuff.

Try not to worry - be good to yourself: good food, exercise and fun is always the best way with these pesky autoimmune conditions.

[Lucylongstockings]

There are loads of reasons for fatigue, if you gogled almost any illness I'm sure 90% of them would have fatigue as a symptom. However morning fatigue is a sign of adnrenal fatigue, its quite complicated Google it. It basically when you be tired yourself out so much by stressing the adrenal glands through over exhurtion n that they say oh I can't do this any more and shut down. They need looking after to return to normal and vitamin/mineral support. An informative website can be found by googling Dr. Myhill the info is nothing to do specifically with PBC

[Hidden]

Hello Batatis.

Well the AMAs are actually known as energy cells.

I was considered 'a high titre' of AMAs later 2010 and diagnosed with these plus abnormal LFts and also I was itching and had fatigue at the time.

I've never had a recheck of the AMAs and quite frankly for me I somehow am not that interested. I have my own theory here that perhaps they can fluctuate at times with our system dealing with other things immune-wise.

I had fatigue during 2010. I never thought anything of it during that year as I was working full-time beyond allotted hours per week and jsut thought I was a bit rundown. I didn't for a few weeks take the itching seriously that started.

For me with making a few changes in my lifestyle at some point during 2011 I simply ceased to stop feeling fatigued. I do get tired certain days due to not having much sleep during the night at times due to itching later at night and it persisting until around 5-6a.m. normally.

I recently posted an article on here asking if anyone had taken CoQ10 supplement as I received an email about antimochondria cells from a reputable source but it was advertising this supplement.

Apparently our mitochodria cells can decrease as we get older as hormones especially in women start to wane with approaching age (ie menopause). So with this in mind also, maybe for someone with PBC with having antibodies that are attacking our system and then a decrease in what they are attacking anyway, it causes more havoc.

It is said that in PBC itching and/or fatigue are of no specific marker as to how one is actually doing with the condition.

I'm not sure about taking urso and the AMAs myself. I think an increased flow in bile aids the system and duress on the liver so that to me is why we can feel greatly improved LFTs-wise and perhaps in ourselves.

You didn't state if you were taking urso or symptomatic?

[Batatis]

Chrissy, Gritty, Lucyl, Peridot,

Thank you four for your support, patience, and information!

I guess I will have to be obedient concerning the ursofalk, especially that I am disobedient concerning the solupred (cortisone). Meaning, I chose to discontinue it despite my doctor sees otherwise. After six months of solupred, my body aches disappeared but other signs appeared, like muscle weakness.

As for my thyroid, I was recently put on eltroxin 50 then 100 even though my TSH is within the normal range yet still there are three nodules which need to be suppressed rather than removed.

One of you, Peridot I believe, was asking about CoQ10 which I have been taking long before I was diagnosed with PBC. However, my advice is not to take any of the over the counter supplements without our doctors' consent. My reasons are our vulnerable livers will need us to be more careful with whatever we put into our system.

Much obliged,

Batatis