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Hi. Thank you for posting all of this valuable information for anybody that is going through autoimmune hepatitis. Like you, I am going on 2 1/2 years and it’s been rough. I was unable to take Azathioprine. I would get violently ill within one hour of taking it. We tried several times. I recently started mycophenalate. I did have some nausea and G.I. symptoms, pain, but my body adjusted within 10 days. I was so depressed. Finally, the symptoms went away and now I am on this just about a month now. I am hoping to get in remission, it’s been a long journey. I appreciate you explaining everything you went through Because it’s exactly what I went through. Appreciate these videos. I have not found any support groups, if you could recommend any, I would appreciate that as well. Thank you again, these RUclips videos are what’s getting me through right now.❤ Kathy

Haven’t drank alcohol in 7 years and been off immune suppressants for over 2 and half years. My dr doesn’t put me on Aza or steroids right away if my liver enzymes go up no more then double. It could be a supplement or virus so he waits. My enzymes were over 1500 7 years ago. 🤦‍♀️. I was on 25 Aza lowest mg. Thanks for your video. 😊. Do you have fibrosis or anything? Best of luck !!! Live your best life !!

Haven’t drank alcohol in 7 years and been off immune suppressants for over 2 and half years. My dr doesn’t put me on Aza or steroids right away if my liver enzymes go up no more then double. It could be a supplement or virus so he waits. My enzymes were over 1500 7 years ago. 🤦‍♀️. I was on 25 Aza lowest mg. Thanks for your video. 😊. Do you have fibrosis or anything? Best of luck !!! Live your best life !!

My daughter was also diagnosed with the same disease 2 weeks ago and this is inspiring. Thank you for sharing

Just got diagnosed today. Thanks for posting

Hi there, I just want to briefly tell u about my experience. In 1985 I got extremely sick and yellow for months, and they just called it non-A, non-B hepatitis. After 10 years they tested my blood again, a process that took 6 weeks of different tests and found it was autoimmune. So it was prednisone and azathioprine and then only azathioprine . I haven’t been able to get off it without immediately going out of remission. So I try to be as healthy as I can, and let my body sort it all out; how to have a healthy immune system while it wants to attack me…so now I’m 79 and want u to know I take my meds every day, (they are short-acting so u don’t want to skip days if possible. ) And they really are doing a nice job keeping me going 😊

I am diagnosed with autoimmune hepatitis 8 months ago.now I’m on steroids…and suffering from side effects of steroids.

I also got ANA positive today.. with mild fibrosis of liver.. is ot AIH?

Hello I found the utube channel I was telling you about. It’s: Autoimmune Hepatologist Dr Craig Lammert. He has a lot of good info & experts that come on there. 🩷🩷

I saw your video & appreciate you sharing your experience! I have it too, was diagnosed in 2016 by liver biopsy & was at Stage 2. Had another biopsy in 2021, still stage 2. Was told I had a mild case of AIH. I feel like I’ve progressed to stage 3 now but don’t want to have another biopsy right now. My Dr put me on Prednisone, which I can honestly say has been a long term nightmare ever since I took it for 3 yrs! Tried Azathioprine but couldn’t take it. Tried Budesonide but liver enzymes went up. Was referred to Duke Medical Center in Durham, NC (I live in NC) to see a Hepatologist who specializes in AIH. She weaned me off the Prednisone I had taken for 3 yrs & put me on Cellcept which has worked good. The side effects of being on Prednisone has caused me to have Cataracts on both eyes. I had to have cataract surgery. Another side effect is it weakens your bones, which caused me to have Osteoporosis. From that I’ve had 12 Compression Fractures in my spine in the past 3 yrs. Spinal fractures are very debilitating & now I have Forward Head Posture (Kyphosis) from the 12 fractures. Last side effect I had from Prednisone was, it made me lose just about all my muscle mass! Just wanted to tell you my experience, you may not have these but a lot of people do. I hope I’m not discouraging you but I sure wish someone had told me what can happen to your body if you stay on Prednisone for a while. My Dr never told me any of this! Maybe your Hepatologist can find another medication to put you on besides Prednisone. I would probably still be on it if I hadn’t of gone to Duke. They are so much more up to date about AIH treatments. Just a note: You may want to check out Dr Craig Lammert, a Dr who treats AIH. He has a channel here on utube. He has a lot of experts to talk on his channel about AIH. I’ll find it & send it to you. Best of luck!!❤❤

During ur treatment, was your jaundice especially unconjugated normal or it was slightly higher

Did ur eyelashes fall out too? I don't know if it's just because of crying everyday but I'm shedding eyelashes and hair so bad

Thanks for posting this (Iknow 2 years ago!) These stories are always super interesting.

My wife is having liver problems now and she will be going in for a biopsy to test for AIH very soon. Were you able to eventually get of the meds or are you still taking them now 2 years later?

Great to see you.. Can you elaborate about workout🏋🚴💪?

Thank you queen for sharing this information :) you made me feel better, also, do you also need to hide from the sun? :0 because I heard that we AIH patients needs to be extra careful with exposing to sunlight

Recently diagnosed myself. Thank you for sharing this. Very helpful.

hello, thank you for sharing your experience! I was diagnosed in 2016 shortly after graduating high school its honestly been a roller coaster especially with the medicine that gets prescribed and being very young it can hard on somedays. So I decided to come on RUclips for other ppl like me who's going through the same..after watching this I will find some support groups too.

Which type autoimmune hepatits you have

Thank you for this update. I am in the process of getting a diagnosis. My biopsy is scheduled in 2 weeeks. I am hoping that treatments will work well for me. May you continue to be healthy.

Do you have high blood sugars as a consequence of taking steroids?

so happy to see you thriving and healthy <3 would love to see a hair journey video!

Hi! I have AIH and I’m just not happy with my specialist. Which hospital do you go to for your specialist? Who do you recommend for your specialist. I’m literally stuck and have difficulty reaching my own specialist

Thank you for sharing. I am in my 9th month of AIH diagnosis. I also have fatigue and tremors known as FND. It’s seemed to come along when I got sick. Things are slowly getting better. Really appreciate the update and the support. Your hair looks fabulous! 😊

Hi Casey, was just here watching yoir video. How have you been?

Does these medications kill our sperm count?

Thank you for sharing this video, especially because only recently there started to be more videos and researches about autoimmune diseases. When I was diagnosed with graves disease 6 years ago which led to autoimmune hepatitis, there wasn't any information about it. A negative side of autoimmune diseases is when you are a woman and want to get pregnant. It can be very tricky. Luckily due to my miscarriages, I went on a lot of research recently before going IVF. I found out a lot of things that conventional medicine don't even say it. First of all, when you're dignosed with an autoimmune disease, you should start an anti-inflamory diet: eat lots of vegetables, reduce sugar, carbs and even fruit intake (because of its sugar, fructose), cut off gluten, dairy or lactose. Add supplements such as inositol with all complex vitamin B, flaxseed oil, vitamin D, selenium, lactobacillus and milk thistle, all natural supplements that end up playing an important role on autoimmune diseases, because they reestablish insulin levels in the body. It's very common on autoimmune diseases to suffer from insulin resistance. Also it's important to understand that anyone diagnosed with autoimmune disease has a heavy metal inflammation, hence it's important to use natural skin products that avoid parfum and other toxic ingredients. It's also important to read the ingredients on food and supplements and avoid ingredients with sugar such as maltodextrin. I'm following all of this that I just described and I'm currently pregnant of 11 weeks, so now I'm crossing my fingers that by keeping this routine my pregnancy will come to a full healthy term. Best luck to anyone diagnosed with an autoimmune disease ❤

Just diagnosed with seronegative AIH . 2021

My enzymes were like 10,000 lmfao that's a rare flex. Now it's normal and hopefully imma get off meds one day

Your story sounds so much like mine. Healthy and then out of no where abdominal pain. They originally said it was gallbladder or pancreatitis and I fasted for 3 days until they eventually fed me because my blood sugar dropped to 40. They finally did a liver biopsy and found AIH.

February 2022 one night I woke up during the night, went to the loo, was there quite a while, was also feeling sick and clammy and really not feeling at all well. Next day not very good so rested. Noticed my pee was very dark and leaving staining on the Tiolet paper. Noticed I was a little yellow, but thought it was the lighting. Around the first of march 22 I noticed my eyes were yellow, so phones the doctors, and was booked in for following Monday.. went and bloods were taken, and told I would hear at some time. 5pm that day I got a phone call from the doctors, to say I was definitely jaundiced and I was to pick a letter up from them on Tuesday 6th and go to the emergency day care centre that same day. I arrived, was seen by a nurse, and a canulier was put in so they could draw blood and in case I was admitted. Blood was taken 2 times that day, I was examined by a doctor my liver area was sensitive, so I was sent for a scan which I think was a ct scan. Was not allowed to eat or drink. Around 5 -6pm that day I was called in to a room, and told the good news is it is not cancer which they would expect in someone my age. I’m in my late 50’s. They would refer me to the liver unit. So during 2022, I went and had bloods taken around 4 times during the year, heard from a consultant over the phone my alt or igg or something was in the 800’s when they started taking the bloods it has come down but not enough to be happy about, so they would monitor me. That was it till 30th march 23 got a phone call to go for bloods either that day or on the Friday. I went on the Thursday, and on the Monday 3rd April got a phone call from the consultant who said I have autoimmune hepatitis, so I would be going for a ultra sound and a biopsy. Got a phone call on Thursday 6th April was given a date for my biopsy and scan, letter coming in post to confirm. So 18th April 23 I will be going for ultra sound and biopsy and see where we go from there and at what stage my liver is at. So all new to me, as far as I was concerned I had acute hepatitis according to the blood paperwork. Since found it this is what you get leading up to aih. Lots of writing I know and apologise for that. Hope you are keeping well on your journey. Oh I lost 1 and half stones during this time. Plus side I have only put on 5 lbs since all this has happened.

hi girl! i just found your vid and i was recently diagnosed with the same thing. so glad i found someone who's going through the same thing, esp someone around my age too.

Hi Casey while you are testing and admitted, do u have a low-grade fever? just got diagnosed and awaiting for the result of bloodwork - C3,TPAG,Anti-dsDNA ,HEPAP this Friday. 🙏

Love ur story just got diagnosed this week can we please get an update god bless you 🙏🏻♥️

Just diagnosed November 2022. My enzyme levels are normal now that I’m on steroids and immunosuppressants. Hope you’re doing well.

can I go to the dance class if i take prednisone?😢 my doctors said that i shouldn’t do that

do you drink prednisone now?

Thanks for this video it really helps xx

Thank you for sharing your story. Did you noticed any improvement with diet?

I got dx'd quickly. I started out with hepatitis. my enzymes were over 1100. all tests for Hep, came back negative. then it came back, even worse. biopsy, showed AIH. 28 years later, still no remission

Am I in the wrong: my boyfriend texts me only like five times a day and we FaceTime for like 30-1hr A WEEK. Am I wrong for feeling disconnected and wanting him to put in some more time and effort, even though he's busy with college. I genuinely don't know.

this was amazing my bf is a freshman in college and i’m a senior in HS and all i ever see is LD never works y’all are gonna get tired of it and it’s so draining so it’s so nice to see people in the same shoes sharing that it is 100% possible if you try hard enough for it ! 🥺

Thank you for sharing your story. It's cool that you don't exhibit or describe any fear you're experiencing. You're more matter-of-fact instead of describing how you felt emotionally about everything. That has been helpful. 👍

My heart just keeps thanking you and thanking you Dr Igudia for all you have done for me, you gave me your words that you could heal any sickness or disease, thank you for permanently curing me of my Hepatitis B virus you are amazing

It’s kylie umm I want the lychee

My son pass away last year because of autoimmune hepatitis. We did'nt know at all that he had this kind of rare liver condition.

What kinda pasta did you use! Also love this video im going vegan for a month aswell!

Thank you for making this video 🥺❤️ I got diagnosed recently and it sounds similar to your story (down to the blood transfusions lol) so I feel your pain. My liver enzymes were 1500 at diagnosis and my biopsy results were inconclusive. It’s crazy looking back at how shitty I felt and how slow they were to react lmao. Its been 6 weeks now and I have this weird constant pain in my side where my liver is but idk if that’s normal lmaooooooo. The doctors in the UK suck (one of my doctors called me a drama queen 🙃) but I am starting Azathioprine so hopefully this nightmare will be over soon 🥲 sorry to rant but it feels good to meet someone with a similar condition. I’m sending you so much love and warmth and I hope you’re doing so much better now. Thank you for this video again ❤️

Hey I hope you are doing well! Thanks for sharing your story. I just got diagnosed with autoimmune hepatitis. It’s Been a super long road for me, took them 6 and 1/2 months to get the diagnosis and have been extremely sick the entire time. My biopsy was similar, didn’t give much insight. The have ruled everything else out so they decided to put me on prednisone because I also Crohn’s disease, another autoimmune disease as well, so they thought it could possibly be autoimmune. My enzymes finally normalized after being on prednisone so pretty positive that’s the cause. I Was curious if your liver enzymes have stayed normal on the Azathioprine? Have you been able to fully tapper off the prednisone? I started Azathioprine 5 days ago and hoping I can fully come off prednisone. Hope all is going well and you are feeling better.

I am a freshman this year and my girlfriend is a senior so we are in the same boat you were and we are also 2 hours apart but it's been so hard. I watched this video right before move in day just to get an idea and it helped but I think rewatching this three weeks later really just helped me because now I can actually relate to it even though it's still so early. I was wondering how bad your insecurities were because I'm in a bad spot mentally right now due to depression and anxiety from being away and I love her so much but sometimes I can overthink and make myself feel worse so what was it like for you if thats not too personal. And how long did it take you to fully trust them because I do trust her but anxiety makes that hard even though I know we love each other so much and neither of us would ever do anything to hurt our relationship. Just like you we also have talked about and want a future together and we both are going to put in the work it takes. Thank you for the video it was very helpful :)