I've read some of the research published on the web and I understand that, at present, there is no explanation for fatigue in PBC sufferers. When it was first suspected that I had PBC I started to take nutritional supplements and also Urso. I definately feel better than I did before I started to take these but I can't say for sure which is responsible. Having said that I do still suffer from extreme fatigue sometimes.
Personally I am sure my not-so-much fatigue during the day now is due to coming out of full-time work (I currently work one day a wk) and taking it easier due to my husband and I having more free time together (it was a nightmare previously due to me being in retail as a covering manager getting hols together) plus the URSO I've been taking since Dec 2010 is helping. I did have better lft's within 2mths of taking the URSO and gradually over the mths and mths have much improved. I still wake once or twice during the night and if a good night (4 days again now without the itch, may make 5 this time), not very disruptive at all. I do sometimes feel a sudden wave of tiredness laer in the day but plough on and have recently started to feel much improved duringn the evening, not restless or wondering about the itch, if it will start. Maybe it is all down to the URSO compensating and the liver being able to relax a bit. At present I just feel for me I'm doing particularly well.
I have the same sypmtoms of a lot of PBC sufferers but I am AMA negative although I am SMA positive for AIH. Interesting concept and I will need to look up information of what SMA does because if that has the same impact as AMA then that would explain my fatigue as well at times.
I have just recovered from Gastric flu but like you peridot I feel for me I'm doing well at the moment. Long may it continue. Like I've said before, we all need to listen to our bodies. x
I'd not heard of SMA before, hadn't even heard of AMA's prior to trying to find out myself about my abnormal lft's in 2010. I had however heard of mitochondria cells.
I did originally have blood tests mths before the AMA one to check for Hepatitis but as far as I know, not this SMA one.
I have just looked on wikipedia and it came up with this bit:-
"Anti-smooth muscle antibodies are antibodies (immunoglobulins) formed against smooth muscle. These antibodies are typically associated with autoimmune hepatitis."
I don't fully understand not being a medic but suppose it figures too regards tiredness and muscles? Hepatitis is apparently the terminology for inflammation of the liver so if it is muscle and liver, maybe it tires the liver that bit more than if one just had the AMA's?
If you test positive for the SMA antibody it is diagnostic of the condition Autoimmune Hepatitis (AIH) which I also have. Thank you for looking that up. As far as I know it has no relevance to PBC.
Hello, never heard of cerebellar ataxia. Had a snoop. Apparently there is an antibody usually present for this conditons, the 'Gliadin antibody'.
Interestingly I also found out this:- ' High titres of AMA are found in >95% of patients with primary biliary cirrhosis (PBC). AMA antibodies can be directed to a total of 9 different mitochondrial antigens (M1-M9) although in PBC AMA are directed towards the M2 antigen, now known to be the enzyme pyruvate dehydrogenase. Low titres of AMA may also be found in chronic active hepatitis'.
I wsa tested for ANA and AMA on my first hosptial consult appt and I got back the result from the doctor as I had PBC (Dec 2010 diagnosed) and I had 'a high titre of AMAs'. My ANA was negative at the time.
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