Igg4 disease

Hi there everyone, I have igg4 disease! This is the first time I have 

I was diagnosed with the condition 2 years ago

No sorry 

I have had on and off for a about a year that I know of. I actually could have been born with this. At that time I had a mass on the head of my pancreas and they did a biopsy and that is when they found I had elevated IGG 4.  Autoimmune pancreatitis was the diagnosis. I have never been a big drinker but have had lots of stomach issues my entire life and was always told I had IBS. Anyway they  put me on 40 mg of prednisone and tramadol  for several months and then had another endoscopic ultrasound with EGD. Everything looked normal. I then had another 3 months later and again everything was fine. Then last November I started feeling bad and knew something was wrong. They put me in the hospital as several of my blood tests were elevated - bile etc. plus I was nauseated and felt really sick. The Cat scan they did showed I had something like a plug blocking my bile duct. Several days later they were going to do another EGD and in the meantime they put me back on prednisone and very low fat food. When they did the EGD my bile duct was fine. Six weeks later I had another EGD and it too was fine. I am still on a small dose of prednisone 5 mg and eat extremely low fat and absolutely no alcohol. Although i really want to be off of the prednisone it concerns me that my symptoms will return. I have a wonderful caring doctor in Denver and I now live in Florida. Eventually I will probably have him recommend someone in Tampa as every-time I need to see him I have to fly back. But as everyone knows it is very hard to find a good doctor. It has definitely changed my life but my hope is I will be able to control it with eating very low fat. If someone has this disease it would be nice to chat with you as I know it is a rare disorder.

Hi all I am new to this forum, but yes I have been diagnosed with IgG4 issues

 

Hello I just found out my IGG4 levels are elevated. I had some prominent enlarged lymph nodes in my GI track last may. My Dr wanted me to get a pet ct scan but my insurance is acting up not wanting to approve. I seem to have sjogrens as well.