AIHdx

[AIGal73]

Hi! New here. I had been experiencing vague, debilitating symptoms occasionally for a few years, fatigue, nausea, chronic back pain, itchy skin, brain fog, etc. November’23 symptoms became acute, as well as dark urine and jaundice and I was basically incapacitated. Hospitalized December’23 with ALT 2300+ AST 1700+ DX AIH. Levels moving in right direction with Imuran and prednisone titrating down 5mg weekly from 60mg.

Frustrating though that I don’t know if my actions are directly positively or negatively affecting my symptoms or labs. Like with my daughter’s type 1 diabetes, we exhaustingly manage all day. WE manage it, we dose the insulin or give carbs based on a high/low blood sugar, not an exact science, but still a cause and effect.

So a few questions, how do I have more control and management over this disease instead of relying on medications and waiting on weekly lab reports?

What factors directly impact autoimmune hepatitis like nutrition and exercise?

Has anyone tried ALA, low dose naltrexone, or other supplements?

Has anyone gotten off of traditional medications and successfully kept enzymes in range and flares away?

Can we prevent the immune system from attacking without these medications?

Thank you!!

[AyrshireK]

Hi there, do you have Facebook? There is a superb AIH support group on there with well over 3000 members who are at all stages of diagnosis from complete newbies to folks who have lived with the condition for 30+ years. It's a UK based group but there are members trom around the world - several from Canada I believe.

The meds are the best way to keep on top of your condition hust now. There is no golden diet or 'lifestyle chance' that you can make - its your immune system that's faulty and your liver is taking the brunt of its assault.

Maybe further down the line if things normalize you can trial (with doctors approval and surveillance) a weaning off but a very high proportion of patients do relapse/flare when med-free then you are back at square one and each flare risks causing liver damage.

Don't contemplate any meds free approach whilst you are still newly diagnosed and blood figures arn't yet normalized.

Join the support group on Facebook for guidance. facebook.com/groups/AIHorgUK/

Katie

[AIGal73 in reply to AyrshireK]

Thank you, I am currently taking a fb break. Agree the medications are necessary right now. Seems outside influences, such as stress for me, may have triggered it. Therefore, hopefully returning body to a balanced state may calm it and hopefully in the future can maintain without harsh meds.

Thank you

[Alexliver]

hi did you manage to find what cause your symptoms? I’m in hospital with bad elevated liver enzymes and they don’t have a clue what caused it.

[AIGal73 in reply to Alexliver]

Diagnosis is autoimmune hepatitis. I had blood work, a cat scan, ultrasound, specific blood work to rule out hepatitis A, B and C, and finally a liver biopsy. As to what triggered that, they don’t know, but in my research it could be environmental, stress and definitely genetic. As to when, I had been experiencing the same but less intense symptoms for a couple years, fatigue and pain to name a couple, before it became acute. You’re in hospital, are they not doing any tests to figure it out?