newly diagnosed aih with tons of questions

[Debbieke]

I was recently diagnosed with AIH and RA. I have heart disease and glaucoma as well.  Glaucoma diagnosed in my late 30's and heart attack at 48. I have felt for years my body was aging too fast. Anyway to my question, I was recently hospitalized with severe swelling in feet and hands with horrible pain. I had been having suspicious liver tests for the last three years. My enzymes at hospitalization were alp 262 ast 192 and alt 222. This was in Nov. In Oct they had tested me and they were almost normal. late december showed they had risen to ast 361 alt 536 . I had been on low dose prednisone since hospitilization. they did a biopsy shows I have plasma cells with interface activity, bridging stage 3fibrosis, moderate portal/peritportal and mild lobular mixed inflammation. Because of the glaucoma my GI is concerned with the conventional predinisone treatment and wants to send me to the transplant center and according to him see about being listed on the transplant list. I am floored and do not know what to think about all this. Not only do I not feel well, I did not realize until I wrapped my head around the diagnosis how many questions are going through my head. I understand AIH is the most treatable form. Just give me some ideas, please as to what this is all about? I will feel better once I get to the transplant center. Until then my mind is spinning. My rheumatologist, said he felt like if my panels were almost normal in oct and i am at stage 3 this must be moving very fast. Thinking about it, I think so to. I however know really nothing about how this works.

[fntn]

Your numbers are very good. The A/G ratio is a bit low but this can be due to many things. Your liver seems to be very healthy! So you shouldn't worry too much, your doctors will get you stable.

As far as fatigue goes, it comes with many autoimmune diseases. My autoantibodies are very elevated and my fatigue is debilitating most days. But you learn to pick your battles and work through things. Keep up the exercise, do what you can but don't push too much.

[Debbieke]

Thanks so much, you seem very knowledgable. I guess that goes with having something like this. You get educated. It is hard to communicate with those who know nothing about liver disorders. I had been thinking the fatigue and weakness was coming from my heart issues, had no idea I would be here. I wish you the best with your journeys through this and thank again:)

[fntn]

Prednisone is needed for both your Glaucoma and RA. And fortunately, it is used to treat AIH as well, but usually in combination: prednisone and
Azathioprine, etc - for example. I would think that staying with your current
treatment plan is a safe route, for now. At least until something new can be
developed that will comprehend all of the diseases involved.

Your biopsy supports the AIH diagnosis, as noted. But you also indicated some bile ductular proliferation in a previous message. And certainly the stage-3, bridging fibrosis can cause compression of the existing biliary canaliculi/ductules, and this can cause the biliary reaction that were noted. But, if it is focused around the portal tracts, and also included portal expansion combined with edema, this maybe an indication that you also are dealing with an additional biliary issue. Additionally, the fibrotic pattern is a hint as to what is really going on, wrt the attack on your liver. If the fibrosis is strictly portal-to-portal vs central-to-central, etc - this will help your doctors understand the form of attack that your liver is undergoing.  

AIH can overlap biliary diseases, PBC and PSC, so it is something that your doctors will be watching for. Given this possibility, your elevated ALP is something they will watch, since the levels are a bit higher than typical for AIH. But always remember. liver diseases are very, very complicated, and we here are not doctors.

With additional blood serum data, we can help you assess your liver's actual condition. The liver enzymes only indicate what's happening with your liver
within the past few days. They do not tell you how healthy your liver really is. Your liver does many things and includes many synthesis and excretory functions. The doctors will use something called the MELD score to quantify this. If you can give us your blood levels for a handful of items, specifically: INR, Creatinine and Bilirubin - we can help your assess your liver's health. Also of interest are the Albumin and Globulin levels, Platelets, Spleen size and RBC/WBC counts - again our livers are very complicated organs.

You don't need to worry about the disease moving too fast. Now that your doctors are on board, and have the data they need, you should quickly become "stable".If it also proves that you are in an advanced liver disease state, then you will need to have a good hepatologist, at one of the major liver transplant centers. This does not mean that you will need a liver transplant! But these are the best liver doctors out there, and you want to have them on your team. But a proper treatment plan needs to be applied and rigorously followed.

There is an additional Medhelp Community to tap into, Liver Disorders. Take care and please keep in touch with us. Btw, I have a sister disease of sorts: PSC, Primary Sclerosing Cholangitis - it is an autoimmune disease, like AIH.

[Debbieke]

I thank you so much for answering and giving me some answers. I have no spleen, it was ruptured and removed in a car accident when I was 11. Inr is 1.0, pt 10.0, creatinine 0.70, bun/creatinine ration 17, bilirubin -0.2,albumin/globulin ratio 0.9, iron saturation 10, iron 40, wbc 15.9, rbc 5.08, platelet 432, aldolase 18.4, ferritin 219 the biopsy also showed lymphocytes with lymphoid aggregates and scattered neutrophils and eisinophils and a patchy bile ducttular proliferation. diagnostic features of an overlap syndrome with another entity not present. i do realize that a transplant center doesn't mean an actual transplant. I am hoping for an arrest and hopefully get back some energy and less pain after "overdoing" it. I want to get back to exercising, but can barely get through the work day and it in itself is quite physical. i have also been put on azathioprine, so hopefully it's getting in check now.