To those with AMA positive, normal LFT and ... - PBC Foundation
To those with AMA positive, normal LFT and no symptoms, is there any medical intervention could be done? Anybody who has the experience?
According to the PBC Foundation's materials, there is no use in worrying, and not all doctors will recommend Urso now, as long as you have no symptoms, but just recommend to keep calm, watch you r diet and your lifestyle too.
With a positive AMA and, hence, a diagnosis of PBC, our preference is for Urso to be prescribed as soon as possible. We know the earlier it is given, the better it does. So, armed with your Bear Facts or with your compendium, ask your health professionals for the prescription.
Again, if in any doubt, please contact the Foundation directly.
Yours,
Robert.
My GP wouldn't even look at the bear facts when I offered it to be read!
Zhupa, Robert is right honey, I know how frustrating it is because I'm in the same boat as you! But unfortunately for us, it's the waiting game, and keeping yourself calm.
I wanted to start the urso now, thinking that it will slow down stage one, which it will, but they wont start you on anything unless you have steady raised lft's ,
They wont diagnose me!!!
Contact the foundation, perhaps they will ease your worries
Regards
I too am AMA postive with normal lfts and no symptoms. I am considered at stage 0(according to my biopsy) but I still take urso everyday. My specialist told me that I didnt have to take it but that it would help to slow the progression of the disease!! I also do whatever I can to keep my liver healthy!!
I am ama positive and gave been for 6 years. None is saying I have pbc and my gp really dies not know
he said to carry on as normal until any symptoms as ama positive dyes not alwAys mean a diagnosis of pbc !
I'm sorry, I have no intention to disinform you, but what I wrote was taken from the Compendium, page 35 (down), where it says that "While it is true that Ursodeoxycholic Acid is thought to slow progresion of PBC, it is often not given to those with very early disease."
Can you clear this up Robert, please? It interests me somehow too, as I didn't do the AMA, but as a child of a mother who died of PBC it is certainly good to know.
I think Robert agrees that panic and worrying are certainly not recommended and of no help.
In the Compendium you'll find useful information about how to deal with PBC emotionally and also how your family and friends can help with that.
hi, Christina
Thanks for sharing. Could you pls tell me where I can find compendium you mentioned? I found informations are quite limited while confusing in china.
The panic thing is also a very serious problem to me. I'm at a loss and hardly know how to deal with the idea that I'm counting down my time.
Hi, Cristina.
I don't think you misinformed. Our preference is that urso is given to everyone with PBC. However, not all doctors do this. In fact, up until recently, not even every liver unit did this.
You can contact the Foundation from the website - pbcfoundation.org.uk.
Robert can give you more information about the Compendium and how you can get one.
You are not counting down your time! Majority of people who have PBC and die, die of completely other causes. Really :). Panic really does bad and you wanna avoid that. Watch your diet, talk to a good doctor, talk to the PBC Foundation and keep a positive attitude.
Talk to Robert :).
