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Autoimmune hepatitis: Questions about treatment and transplant
I’m 34, I’ve diagnosed HIA 23 year ago. Also hashimoto, and Sörgen.
Now my liver is with cirrosis and my treatment base is prednisone + metfomyne + diuretics +rifaximina. I’m expecting a transplant but I’m so afraid about it.
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Thank you so much for sharing. Yes, AIH is frustrating and a constant mental battle. I appreciate your input with your experience.
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1 ReactionHi, I was diagosed in December 24, on 40mgs prednisolone, then in Jan 25, pred dropped to 30mgs and 50mgs Aza was added. Aza was increased to 100mgs inn Feb 25 and I was rold the initial low dose was to see how I tolerated it before it went to a higher dose. 100mgs was on the basis of 1mg per kg of weight (I'm under 100 kgs). Pred was reduced at 5mgs month until last month when it hit 10mgs. Hepatologist said this was my long term maintenance level but I'm having awful side effects from the pred so I've continued the taper myself (I've told the hep what I'm doing and that as my liver levels reduced quickly from ALT 1,553 to 17 in 4 months. And, I don't drink / smoke and have healthy diet etc. that I think I'm a good candidate for coming off the pred - I only have F1 fibrosis and a bit of fatty liver). I've seen recommendations that the Aza maintenance dose should be between 1-2 mgs per kgs body weight.
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1 ReactionThank you for sharing your info. All of this is so confusing!
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1 ReactionI think it gets confusing because it's such an individualised disease that treatment plans often differ between individuals. The bit I find unfair is that even if you do all the right things, because of the unpredictable nature of AIH, it can still go wrong. Having said that, the stats I've seen suggest only 3% liver trasplants are due to AIH so only a very few people with the disease experience extreme liver problems. The majority of people, once the right medication regime has been worked out, have long and normal lives. The first few months can be difficult as your doctors work out which meds, and in what dose, are going to work best for you.
What side affects are you experiencing with Mycophenolate? I am on it too but have to take Furosemide because of possible ascites, I have an upcoming dr's appt next week to see if that is the case.
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1 ReactionHonestly biggest thing is that it makes me extremely tired after taking it, other than that getting along with it fine. Yikes hope you're appointment goes good. I never had the fluid build up
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1 ReactionDo you got any negative side effect from been 7 years on Prednisone
AIH really forces a balance between protecting the liver and managing tough side effects. What helps one person can be unbearable for another. Staying in close contact with your hepatologist and adjusting doses slowly can make a real difference. It's good to hear how others are finding their footing. These shared experiences remind us we're not alone in figuring out what's tolerable and what's truly helping.
@maize I was diagnosed November 2023. I had and have the same side effects/symptoms. The migraines did finally subside, dark urine and jaundice gone. My dosage was reduced from 360 2x daily to 180 2x. Still get swollen ankles and bloated and itching, oh the itching at night. I think my hair thinning almost bothers me the most. I'm having less side effects on lower dosage especially not nauseas all the time. My levels are good, but if my blood work goes up then I'll have to go back to higher dose. As my dad used to say, "you have to live with acceptance." I'm trying.
I have Autoimmune hep since 2006, been on azathioprine since then. Never had any side effects. I'm currently on 200mg daily. I usually do no have side effects from any drugs. Sorry your going thru that.
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