Autoimmune hepatitis diagnosis

[Daisy-duck]

Newby here. Looking to see how other people found the process of diagnosing Autoimmune Hepatitis?

I had liver biopsy and was started on meds. But by time im going back for biopsy results ill have went from high does to low dose. I was kinda expecting to be monitored on the reducing to see how it was affecting ?

A bit confused. Anyone been though care to share ?

Thanks

[daisychain45]

Have you had any blood tests during the process at all? I was diagnosed in October and never started meds until December (I originally had a bad consultant and after 2 stays in hospital he was replaced and I was started on meds straight away) I was put on 40mg Steroids daily for 3 weeks then weekly reduction of 5mg until I reached 5mg daily. During this my bloods were monitored weekly, I also have NAFLD and Cirrhosis so I did have other issues going on that needed to be monitored but the main concern was getting AIH under control. My LFTS were improving and I was started on Azathioprine and gradually built them up to 125mg daily my LFTS were then showing deterioration and I'm now back on steroids as well. I have been on weekly bloods throughout the whole process. I was never able to have a biopsy due to clotting issues but was told it wasn't entirely necessary fur me as they wouldn't see anything they didn't already know 🤷🏻‍♀️

[daisychain45 in reply to daisychain45]

Sorry, I also meant to say welcome to the group. I posted for the first time the other night and everyone has been so helpful in their responses. There are a lot of people with years of experience with AIH so you're in good hands here 🙂

[AyrshireK]

The process of obtaining a diagnosis of Auto Immune Hepatitis is like a jigsaw puzzle, lots of bits need to fit together.

Biopsy is one part as if they get a good sample it should show exactly where in the liver the inflammation is occurring -sometimes isn't conclusive.

I imagine you started on prednisolone to bring down inflammation levels - often a positive response to steroids is enough to confirm the diagnosis.

Have you not been having blood tests to see if your ALT level was dropping? It is certainly unusual to start reducing steroids before you know they have worked or are working and often as you reduce pred/steroid an immune suppressant is usually begun to keep the inflammation at bay.

Treatment for AIH is usually described simply in terms of a raging inferno (inflammation), a fire extinguisher is used to put out the initial fire (steriod) then long term an immune suppressant is introduced and like a sprinkler system throwing a fine mist of water over the fire it presents re-ignition of the fire.

I don't know whether you do Facebook or not but there is a fantastic UK based AIH page on Facebook with almost 2000 members - all of whom are either patients with AIH themselves or like me a loved one of a person with the condition. The group is moderated by fellow patients and supported by some of the top doctors in the UK working in the field of AIH treatment and research. You'll find us at:- facebook.com/groups/AIHorgU... Guaranteed a warm welcome and lots of advice from folks on the same journey as yourself.

All the best, Katie

[Daisy-duck in reply to AyrshireK]

Hi thanks for the response.

Ive had loads bloods a liver scan, a mri scan, then a biopsy.

Yeah ive been placed on steriod had 2 week 40mg then reduce by 5mg each week.

My own gp has checked blood once. But ive had no news from hospital. Was expecting what youve said about monitoring to ensure the steriod doing as planned at each reduce doseage.

Obviously ill be happier lower better or none. But then dont want to become unwell as steriods on low dose arent working as well.

Thank yiu so much ill have a look on facebook thanks

[GrandmaDylan in reply to Daisy-duck]

After months of blood tests, scans, liver biopsy and mri and ct scans I was diagnosed with autoimmune hepatitis in December. I was given prednisolone and aza and told to have bloods at the hospital every two weeks. I wasn't convinced and wanted a second opinion from a well respected consultant hepatologist. He decided that I don't have AIH. I am so glad I didn't start the treatment as I've previously had horrible problems with prednisolone in the past for a different condition. Although the hepatologist I was seeing jumped the gun with the diagnosis I know that they would have monitored me closely. I'd ring your hepatologists secretary and explain your concerns regarding monitoring. Good luck Deb

[Daisy-duck in reply to GrandmaDylan]

Thankyou so much.

I called today and im awaiting a call back. Im due to fly on holiday in 2 weeks so really want a bit of assurance before going.

[Jillsky]

Hello from New York. It’s the first time I’m posting here. I was diagnosed with AIH in 2012, at age 60. At that time my ALT and AST numbers were in the 200’s and a liver biopsy confirmed the diagnosis. I went to a top liver specialist in Manhattan who started me on high doses of prednisone and gradually weaned me down to 5mg per day when my liver enzymes had normalized for a while. He told me to come back in six months and continue with the 5mg. I was miserable on prednisone, gained weight, cranky. Just about 6 months later, one day my urine turned brown (!) and I called the doctor and went immediately for another blood test which found my ALT and AST to be in the high 500’s. The doctor started me again on 60mg of prednisone daily. I decided I could not live on prednisone and so found another doctor, also a liver specialist in Manhattan. This doctor started me on an immuno suppressant called Cellcept. He said he did not understand why the other doctor told me to wait six months. I am now going for monthly blood test and see my doctor every three months and go for an MRI every six months. I used to be the type of person who would take a blood test and wait for the doctors office to call me and if I didn’t hear from them I just assumed everything was OK. My point is you need to be your own advocate for your health and don’t depend on the doctors office to call you. I take my blood tests at an independent lab every month and then I email the my doctor. Even though the lab faxes them to him I want to make sure he sees them and they’re not sitting in a basket on the receptionist’s desk. I’ve been on Cellcept for 5 years and only had one minor flare up, but because of monthly blood tests it was caught early and dealt with. I’ve been feeling great, dropped that weight, and have lots of energy. Good luck with your diagnosis, but know that AIH is definitely manageable, as long as you stay on top of your doctor.