20 mg of prednisone for AIH?
Hi everyone. Glad I found this group. I was just
diagnosed with AIH but I am asymptomatic. I have advanced fibrosis (stage 3). They wanted to start me on 40 mg of prednisone but I asked for that to be reduced as I've never taken it before and I was anxious about side effects. I've been on 20 mg for about 2 weeks now. No serious side effects. I feel a bit more fatigued but nothing terrible. I am hoping that this moderate dose is effective at reducing liver inflammation. Anyone have experience with using this moderate dose when they were initially diagnosed?
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Curious how you were diagnosed if no symptoms. I also have AIH stage 3/4. They haven’t put me on prednisone as they said cirrhosis is too advanced. Taking Ursodiol for PBC which has helped tremendously and no side affects like prednisone. My daughter has AIH as well. They started her on prednisone then switched to Azathiaprine with good results no side effects like prednisone. She also takes Ursodiol for PBC.
Hi Cindy358. Thanks for your reply. My raised liver enzymes were caught incidentally through bloodwork. My GP noticed the ALT/AST elevations and sent me to a liver clinic. The enzymes were monitored there for about 2 years, and they continued to be above normal, so in November they decided to do a biopsy as they weren't sure if this was NAFLD or something else. Based on the biopsy, they ruled out NAFLD and found advanced fibrosis (stage 3-4), and the pathologist report suspected autoimmune hepatitis based on the elevations of liver enzymes, GGT, IGG and presence of SMA. I was quite surprised because I am asymptomatic. I'm a 55 year old female who is extremely active and otherwise very healthy. On January 7, I do my bloodwork again in and hopes that the prednisone has stabilized my enzymes. I would have been on it for about three weeks at that point. I appreciate hearing about both you and your daughter and how you are being treated, and hope things stay well for you both. Mostly, steroids are not something I want to be on long term!
I’m jealous! My AST and ALT were above normal for over 15 years. All community doctors just kept telling me it was fatty liver and brushing it off. Then in 2020 I started having severe fatigue. Doctor noticed low platelets and WBC due to enlarged spleen. Again community doctors were clueless. I had colon resection in 2023 and my liver enzymes went crazy. Now I am at Mayo. I have lost respect for community doctors as they just care about the number of patients they can see in a day and not about helping the patient. Glad they found your AIH early. Prednisone seems to help stop or slow the progression of the disease. I am only 61 but will need a transplant to survive. I was never sick until a couple of years ago. It’s frustrating to be healthy and suddenly be sick.
I'm so sorry to hear this Cindy358. What an awful experience to have to go through! It sounds like they really dropped the ball. I think fatty liver disease is the easy go-to because it is so common, and now your life has been forever altered by oversight, laziness, etc. I'm so sorry. I hope you are in good hands now and getting the care you deserve at Mayo. My heart really goes out to you and all you have been through and are still going through.
In hearing your story, I recognize how lucky I've been. My enzymes weren't even crazy elevated when they sent me to the Liver Clinic, but they still decided to do the biopsy though I took some convincing because I am asymptomatic and previously had a normal fibroscan. The doctor managed to convince me as he said it should provide a pretty definitive diagnosis in that it could rule things out. I'm now so thankful I listened to him.
Yes, it is extremely frustrating to be healthy one day and then just out of the blue get hit with devastating medical news.
I just wonder what triggers the misguided attacks on the liver. I know there can be a genetic component, but if one knows what triggers the overactive immune response, at least there is some small sense of control.
Thanks too for your thoughts on prednisone; this is helpful.
Hang in there; sending healing wishes your way.
Thanks for your reply. My disease is genetic. My oldest daughter has it too. Because of her diagnosis they were able to diagnose mine several months later. He pregnancy triggered her disease her hepatologist said. Hang in there! Take the prednisone and control the fibrosis.