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Lupus and PBC

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Posted 12/14/2015 5:05 AM (GMT 0)
Hi everyone! I'm still pretty new to this auto immune disease world
A couple weeks ago, I had a follow up at my Gastro because of my gallbladder surgery. He listened as I told him that I was Ana positive and expected to have lupus. He ran his own set of panels for Gastro-related auto immune diseases. Sure enough, I'm AMA positive also. This suggests primary biliary chrosis (liver disease).

Does anyone else have PBC? Or both ANA and AMA positive?
Posted 12/19/2015 5:31 AM (GMT 0)
I am also positive for both Ana and AMA. I am still learning about it too..so much conflicting information...hard to sift through it. Are your liver numbers off?
Posted 12/20/2015 11:53 AM (GMT 0)
My liver numbers are typically in normal range. My alkaline phosphate actually runs very low, instead if high....so I'm not sure what that's means in regards to PBC. My enzymes have only ran high once that's I've caught (they were barely out of range and this was 7 years ago). My bilirubin runs a couple points higher, but docs never seems concerned with it.

So...I guess it's fairly stable at this point. However, it's unsettling to me that's I'm AMA positive.
What about you? Are your numbers off?
Posted 12/21/2015 12:12 AM (GMT 0)
I don't know of anyone else that is positive for AMA and has lupus..so nice to have someone to talk about it. I am curious what info you get from your doctor...I just recently found out. My alkaline phosphate is also low. I do have one liver test off that is it. I did join health unlocked PBC boards to learn more..lots of conflicting info. I wish we could message on here without giving email on profile...I am Sarah4314 on that site if you want to message me there..I would love to learn more about what your doctor said. Please take care. Are you new to lupus too? For some reason the PBC has me more concerned.
Posted 12/21/2015 12:16 AM (GMT 0)
P.s. I do know that we are lucky to be catching early if we do have it..there is medicine that can slow it
Posted 12/21/2015 2:28 AM (GMT 0)
Sarah2014,

Healing Well allows you to set up an email address to use here without exposing your "regular" email address -- click on "email" in the middle of the second bar at the top. Create an email address, then put in in your profile.
Posted 12/21/2015 11:03 AM (GMT 0)
Thank you Lynnwood. I am not sure what I am doing wrong..when I click on tab for email..it says to use link above to get email..but that just brings me back to homepage. I will keep trying:)
Posted 12/21/2015 1:07 PM (GMT 0)
Oh, apparently it isn't working right now. I will report it to the administrator. Sorry.
Posted 12/22/2015 1:33 AM (GMT 0)
Thank you!
Posted 12/29/2015 5:51 PM (GMT 0)
Turns out that the administrator is discontinuing the email service. If you don't want to use your "regular" email you can create an account on one of the free services and use that. (gmail, yahoo, etc.)

I've never been spammed or gotten unwarranted email from any HW members - remember only members can see your email in your profile - in the over 10 years I've had my email available.

So maybe you'll feel comfortable with your existing email....
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