Autoimmune Hepatitis

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They always come in three

A doctor told me ”they always come in three” when I got my hypothyroidea diagnose in 1998. 2001 I lost like 20-25 kg in 6 months. I was all bones. No matter what I ate. My new doctor ignored me completely. Said it’s natural weight loss. When she finally got the reults back. I was sent to a specialist. I have AIH. Got diagnosed in 2002. I was 25 years old.

The doctor’s words echoed in my head. ”They allways come in three”

Thought he was wrong. But no. My body is batteling me. Trying its best to kill me. I got the diagnose Rheumatoid Arthritis in 2011.

I hope my body is done now. I have so much meds for my physical and mental health I can’t even keep track of them by myself. I get pills sorted in bags. And injections every week.

#AutoimmuneHepatitis #RheumatoidArthritis

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I Nearly Died Last Year and Now I Have To Do The Same Thing On The Same DayA Year Later-So Anxious!

Last year on May 19, 2022 I went in for my routine Remicade infusion and bloodwork. I had been told my liver enzymes were a little elevated but nothing that they felt I needed special medication or a new specialist added to my team. The day after my infusion I felt really bad, but I thought it was because I was a having a really stressful time at work. I woke up on Saturday morning with pain at the bottom of my sternum. I thought it was heartburn so I took some medicine, it didn’t work. I started having trouble breathing so I used my inhaler which helped with my breathing. Later in the evening I had to use my heartburn meds again. I started checking myself for heart attack symptoms-none, but the pain increased. I eventually got to the point of tears I was in so much pain. My fiancé (now husband) was cooking supper when he came in the living room and saw me crying he dropped everything and took me to the hospital. I was in liver failure with enzymes near 1,000. (If you’re unfamiliar with what’s normal it’s 50-55.) The next week I was in the hospital but don’t remember a lot. Over the next couple months I had tons of blood draws, scans, and a biopsy. I was told if I didn’t have a transplant I was going to die. I was diagnosed with Autoimmune Hepatitis. It was an emotionally and physically draining summer and then I started back to teaching the best I could with enzymes that started going down for no reason. I stopped Remicade and started Rituxan in November. This coming Thursday I have my next Rituxan infusion which will exactly one year from when the nightmare started. I start crying when I think about going for my infusion. I’m so scared about getting it. I know my enzymes are ok but I can’t stop feeling anxious about it.
I know I’m going to be ok. I just needed to vent about it. Thank you for reading this far. #AutoimmuneHepatitis #RheumatoidArthritis #Lupus #ComplexRegionalPainSyndrome #chronicmigraine #remicade #rituxan #Fibromyalgia #ChronicIllness #ChronicPain #Anxiety

11 reactions 6 comments

Just One of Those Days

Have you ever had a day where you just want to throw your hands in the air and just say, “I’m done!” However, you know throwing your arms in the air aren’t possible in the first place because you hurt so very much. Also, you have way too many responsibilities as a parent and spouse to do just throw in the towel. I suffer from Rheumtoid Arthritis, Fibromyalgia, CRPS, Scoliosis, and Lupus and am currently in a massive flare. I’m exhausted and in pain, but I can’t rest or get comfortable. I work full time as a Special Education Teacher and have to walk from one side of the building to the other all day long and use every bit of my possible energy at work so when I get home I have no spoons/energy left when I get home. It’s also my daughter’s senior year in high school and she’s currently in the middle of softball with playoffs about to start.
I am not scheduled for an infusion until November and haven’t had one in forever due to going into liver failure and being diagnosed with Autoimmune Hepatitis over the summer. I swannee my immune system is truly trying to kill me! I’m so ready to feel better but don’t when that will be. Today is just one of those days when I feel like and realize this is possibly what the remainder of my life and body is going to feel like. Yuck! The bright spots in all of this is I have an amazing support system in my family including my husband, parents, in-laws, children, and friends. I also have my faith in Jesus and that He is watching over me and helping me through it all.
I apologize for my rambling. I just know only people who experience this truly understand the frustration and sadness of living in chronic pain.
Thank you for reading this far.
#ChronicPain #RheumatoidArthritis #ComplexRegionalPainSyndrome #Fibromyalgia #chronicmigraine #RaynaudsPhenomenon #AutoimmuneDisease #AutoimmuneHepatitis #Spoonie #exhausted

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“POTS” struggle

Really struggling with supposed “POTS symptoms”(as per my doctors) that I haven’t heard other POTS patients struggle.
I understand POTS can interrupt digestive function but can it cause your GI system to develop autoimmune hepatitis or primary biliary cholangitis? Or can it make your head bop like a boggle head doll and motion “No”? Or can it paralyze your vocal cords on occasion? I really feel like I am dealing with something other than POTS. This feels insidious.

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Liver issues

Was misdiagnosed with MS and then ALS in the early 2000’s. Had classic signs of Lyme 1999, was told no such thing as chronic Lyme. Destroyed peripheral and autonomic nervous system. Now being evaluated for autoimmune hepatitis with liver failure. Properly diagnosed 2004, treated with long term antibiotics, have relapsing and remitting periods of flares.

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New here, but not new…

Hi everyone. My name is Jamee. I’m married with 1 son, and 3 stepdaughters. I suffer from several chronic illnesses including Lupus (SLE), Multiple Sclerosis, and Autoimmune Hepatitis, along with a few more. I also have Major Depression, anxiety, and PTSD. I’ve been a member of The Mighty for a while, but rarely post. I want to get better at that, and I plan on posting more. Looking forward to getting to know others, hearing their stories, and telling my story-there’s a lot to tell! Thanks for reading. #MajorDepression #Lupus #SystemicLupusErythematosus #Depression #PTSD #MentalHealth #AutoimmuneHepatitis


Transplant Evaluation

I’m scheduled for an initial evaluation for a liver transplant (due to cirrhosis from autoimmune hepatitis) in a couple of weeks. What should I expect from this set of appointments? How can I prepare? What questions should I ask?

#AutoimmuneHepatitis #LiverTransplant #LiverDisease #OrganTransplant

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Feeling lost

Autoimmune disease and work (above photo of me in life threatening DKA)

I’m 21 years old and I’ve never felt this out of touch with the world before. I’m really conflicted between getting a part-time job, or reaslising that I will not be able to work and do the things other individuals my age do. Often people will see me out with friends or family, laughing, smiling and not looking disabled at all. However many of my 7 health conditions are invisible, unless im in my wheelchair on seizing on the floor. Sometimes this can be a problem for me, people often tilt their heads when I say I don’t work, or im on health benifits, and for some reason there’s such a stigma around it that sometimes im even embarrassed to say. 21, most of my friends are full time workers or people I know have families and houses, not me, im stuck in a rut of not knowing what to do. I feel so lost and confused. Mentally and physically drained. What am I meant to be doing. Should I be trying harder, or should I go easier on myself and just enjoy my life without worrying about other peoples opinion of me. Ugh!!!!! it’s so frustrating that I want to be able to do all these things but my body just doesn’t let me. Time is the best healer in this situation I believe. Give myself time and a chance to self love and find myself before I go into looking for jobs and a house etc. Who cares when I get there or how!! I know I will someday (fingers crossed) just enjoy the here and now!! #AutoimmuneDisease #ChronicDepression #ChronicFatigue #EpilepsyFoundation #AutoimmuneHepatitis #Lupus #DiabetesType1 #AutonomicDysfunction #Hypothyroid #GettingHelp

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#PTSD trigger

I have been dx with autoimmune hepatitis , having GI symptoms , and losing wt. I need to have colonoscopy this week. Last 4 nights I have been having dreams of the rape I endured as a teenager from family friend. I am hoping after the procedure, the dreams end. But I did notice something in reading over this post.... the word “the” not “my” in front of rape. I am no longer owning it. Progress-it was done to me, I did not cause it
# therapyprogress#

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