Does anyone here know who treats PBC and AI hep? Rheumie?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1950
   Posted 3/20/2011 10:24 AM (GMT -6)   
Like everyone here, I had a multitude of annoying and worse autoimmune problems, and see a good rheumie. He recently found I have Primary Billiary Cirrhosis and my family has confirmed another type of autoimmune hepatitis AIH1.  They call this syndrome Overlap syndrome.  Sort of like having MCTD. Which we have too.
 
My rheumatologist is the steroid king in my book, he does a great job.  Other docs just don't seem to know how to prescribe steroids as well.  And I don't want to be getting steroids from multiple doctors.  I don't know if the AI liver can be treated by my rheumie, or should be.  I wish he would.  I know that liver judgments as to the condition of my liver and such might fall to the gi.
 
I know some people here have kidney problems and I wonder how that works, the nephrologist and rheumie working together?  Who treats what and how?  thanks for any help you can give.  I need to go back to Mayo, just waiting for test results and local gi doc visit.  I need to have a local person here to deal with any problem if I end up in the ER.
 
 

anna24
Regular Member


Date Joined May 2009
Total Posts : 27
   Posted 3/20/2011 10:56 AM (GMT -6)   
Although you have more issues than I do and have to see more specialists, I see
both a rheumy and a nephrologist. I make sure after every visit they each send
their notes and bloodwork results to each other. Staying on top of this can be
a full time job! But so far, it has gone well. The nephrologist is strictly for my
kidney issue which is lupus nephritus. The rheumy is for any other issues that
may crop up related to SLE. And, of course, monitoring meds and blood tests.
Take care.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 3/20/2011 12:51 PM (GMT -6)   
My internist, rheumy, and nephrologist all work together to treat me without any problems.  Now I primarily see the internist, rheumy (had 3 involved at one point), GI doc, and dermatologist.  If they don't communicate I make sure they know what is going on.  You are the patient and need to manage your docs and if they don't play well together find ones who do.
 
Bill

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/20/2011 3:09 PM (GMT -6)   
I agree with Bill, I would love to go back when i could just see one doctor for everything but that ship has sailed. I am fortunate that so far i am getting the communication going that i need and i only go to one pharmacy and I left a pharmacy because being on so many different med i wanted to feel like my pharmacist was competent as well if i had questions with going up on what and down on this.

I feel for all of you. Auto Immune is a special ride.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/20/2011 3:28 PM (GMT -6)   
Despite having Lupus for over 9 years now, my mind still interprets "AI" as "Artificial Intelligence".

Today I wonder - maybe Auto Immune diseases DO have Artificial Intelligence?

lol
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 3/20/2011 4:12 PM (GMT -6)   
Whatever intelligence I had, artificial or otherwise, was zapped by lupus and prednisone.  Sometimes it is nice to live in oblivion however....just not when you need to remember something.
 
Bill

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1950
   Posted 3/22/2011 8:43 AM (GMT -6)   
Thanks, so far this gi has been as good as I can get here and afford, which isn't so good. Hopefully, he will finally, after 18 years of no proper diagnosis and liver nearly totally affected, and probably some unnecessarily, by the disease, he will do something. Its like a Greek play, dealing with these gods on earth, being a mere mortal. I think Lynnwood is right, there is some Artificial Intelligence at work here, on the part of my docs at some point. Sometimes I think they don't know what any of this is. I talked with the transplant center at Mayo yesterday, explained what is going on, and they changed my doc again, I hope this one is good, and I am going in April. Maybe Mayo will get on the stick finally.
Love, Marji


Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes
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