Autoimmune hepatitis disease

Hi Laura,

  I was just diagnosed 2 weeks ago, they did Hida Scan,ultrasound,MRI and blood tests of course,, said 99.9% sure AIH. I escaped biopsy for now, but going to talk to another DR as well. WhT is your story? This site has been great for me,, so happy to have found it.. 

Terri

I was under the impression the only way to confirm AIH is through liver biopsy.  Of course things change every day.  It would be awesome not to have to have one.  The procedure itself sounds scary but was pretty easy, it was the lying still for 3/4 hours after that was hard for me. 

I was falsely told I had AIH 2 years ago by a know-it-all doctor a few weeks after my dad died, based solely on some blood tests that were all wonky after the shock of losing my dear dad. No biopsy whatsoever. Every subsequent test perfectly on pointe.

Despite a complex medical history and currently extensive prescription list, I got put on the big ones: Imuran and Prednisone (which I told him in advance i was seriously allergic to). Prednisone tapered off, leaving me unprotected from the massive allergic attack I got from the Imuran. Gained almost 1/2 my body weight in 4 weeks, permanently damaged bone marrow and entire lymph systems because of the Imuran. Epilepsy. Now, a year and a half after the reaction, I haven't lost or gained more than a pound or two. Extreme pain. Terrified of the body that I'm trapped in. Bone marrow damage. Low O2 levels. They figure I'll have 8-10 years before my broken lymph system fails and I die of cancer. I used to be beautiful, happy, feel joy, talented, productive, good career. Now I'm just pain and hatred and tortured.

My worst fears, come to pass: dieing young, alone, broke, in pain, in an ugly body that's not my own. And because someone else did this to me deliberately because I had "problems" to begin with.

Off to go hug my dog. She finally started "speaking to me" again after months of not recognizing me.

Never trust anyone with your life. Get a second opinion even if you're talking to a god in his heaven or a king in his castle.

Laura, 

I am so sorry Laura, it sounds like you have had more than you deserve and I am so very sorry. If you were misdiagnosed with AIH, did they ever find out what it really is? Could you have avoided The Prednisone and Immuran? how long did you take them? I M sorry you have other issues and I hope you continue to get well. they should certainly of looked at alternatives if you knew you were allergic! 

i am indeed getting a second opinion, I am terrified of Drugs of any kind, I'm just diagnosed with AIH 3 weeks ago, and emotionally trying to deal. I will put you in my thoughts and prayers..and  hope they can find a solution for you! 

Hi Tlctisme,

You are so sweet! Thank you so much for your kind words and prayers, I really appreciate it. :-)

I was on the prednisone for the first 5 months, then tapered off of it. I was on the Imuran for the first 6 months, at which point the reaction caused me to have to stop taking it against medical advice.

The leading theory is that what went wrong initially was psychosomatic: the blood draws showing elevated liver numbers were taken exactly 2 weeks after my dad died, and many of my blood numbers were off. Another likely possibility is that I was passing a gallstone (which can apparently happen without any symptoms other than elevated liver levels, such as was seen in me).

The doctor should have done a liver biopsy according to everything I can find on the Internet. This is the accepted (from everything I've read) gold standard for diagnosing autoimmune hepatitis. My doctor never did one. Subsequent doctors said that, since my blood levels went down to the normal range about 2 days after I started the medicines (unreasonable from a science/medical perspective), it would actually be inappropriate for them to do a liver biopsy at those future times since the numbers returned to normal way too fast for the drugs to have taken effect, therefore AIH was unlikely therefore the minor risks of the biopsy were still too great to justify doing one. My liver levels have been totally normal (midrange of average) at every subsequent checkup.

I should have gotten a second opinion, though at the time I was told this doctor was "the best" and a second opinion would take time I couldn't afford if it really was AIH.

There's A LOT more to the story that would be inappropriate for me to convey publicly, but I did report the doctor who failed to do the biopsy to the Board of Medical Practice for possible sanctions on 10 items, and they are trying to get him to release information to determine whether he was at fault or not. If he weren't guilty of something, logic tells me he would probably have provided the requested information months ago when first requested by the Board. I also reported him to my health insurance company, who was very interested in what I had to say and will be doing their own investigation.

I am so very sorry that you were diagnosed with AIH, but glad to hear that you are getting a second opinion. Be prepared for the meds to have side-effects: weight gain being one. And if you suddenly swell up like a balloon, go to the hospital: I should have done that and stopped the meds immediately without waiting for the doctor to get back to me (which he never did anyway).

Drugs are scary, but they also can be lifesaving (I know from extensive personal experience). My philosophy is, take all the (legal) meds you need, but not one extra. Get good doctors, second opinions, and don't be afraid to switch (fire) doctors who you don't "click" with or trust with your life.

You are in my thoughts and prayers. Sending you healing wishes, strength, courage, hugs, and all of the extra spoons I can spare today. (Google "Spoon Theory" if you don't know about spoons--it's handy for communicating how you're feeling to others close to you.)

Therapy is also something to consider, at least temporarily until you get your feet under you with respect to AIH. Find a therapist who specializes in medical issues--it will require some calling around and asking for referrals, but it can be SO worthwhile.

Best of luck to you! Thanks again for your kind words and prayers. You are a good person, and this is a very bad thing to happen but I can tell from your words that you are smart and will be able to live well with this disease.

Hugs,

Laura

Hi i also believed that a liver biopsy was needed to be done for a positive confirmation of AIH but then again my child has had two biopsys now and was dignosed 16 months ago so maybe things have changed i guess technology is always improving so hope medicine is too.

WOW LauraS what a lot for you to come to grips with its hard to find the right words to say. I have had to sit back and watch my child go through some tramatic things with his AIH, medication and procedures its a very scary time for me i can only imagine what it must be experiencing it personally and i am trying to come to grips with where i went wrong ????? did i give it to my child ?????   i have learnt watching that it can grab you and suck your happiness right away IF YOU LET IT.  Easy for me to say im not having to go through it but im learning to try and live with it and say and do all the right things to make life less pressured while my child gets his head around it.  I bought my son a dog she is a wonderful gift sleeps with him every night i hope he finds some comfort in her cuddles like you do too.  i wish you all the very best in your medical journey from the bottom of my heart

Thank you so much, keifer13826! You sound like a brilliant and supportive parent. My mother is that person for me, also, supporting me in every way and saying all of the right things. (My father is gone now.)

I'm getting intensive treatment for my mental health issues as well as for the edema and my other problems, so I'm on a good path now that the edema has finally been correctly diagnosed instead of "prednisone fat". 😃 So I'm allowed to eat a normal amount of food again--no more extreme weight loss diets from the nutritionist.

Surviving is all about support and it's a mind game, too: you have to control what you think. I'm alive today because I'm good at that, and at researching my own symptoms on the Internet and playing physician's assistant. Doctors today I think are better, too, because they realize that the mental is (at least almost 😉 as important as the physical.

Very good health, hugs, and wishes to you and your child. I wish you and everyone with this scary disease the very best.

Regards,

—Laura

Hello, seems like a high dose still, you sound almost exactly like my case .. the prednisone can be reduced 5mg about every 5-7 days .. this is never fun , and it's the last 10 mg that I found to be the hardest , I drag that out a bit longer... just bite the bullet and do it .. it's not easy for any of us .. just make sure your blood work is staying normal while your declining off .. every 2 wks seems about right.. I'm on 75mg of AZA but I fought to keep that lower.. doc wanted it higher .. but if my blood levels are normal and no flare ups .. im going to take my chances .. if our enzymes stay up then that's a different story .. but Mine declined to normal the first flare up with zero meds because they didn't know what it was .. my biopsy was inconclusive .. and second flare up , 5 months later, they concluded AIH .. and threw me on preg and AZA , and it declined to zero in the same amount of time .. so I'm torn about the meds.. I'm going to see if it happens again and rethink the amount of meds to take .. .. my doc gets angry but I researched this and my son , 26 , has crohns since he was 15, and prednisone was common med in my home .. and coming off them is done the same way every time .. I've only taken them once, but my son , 2x-3x a year .. I consider him an expert

Hi,  I agree with Margie that it is high dose. I was just diagnosed 2 months ago, started at 40 MG Pred and nothing else....I'm on 20 mg now and levels are normal ,going to 10 this week. Every 2 weeks blood tests. you don't get tested again until Feb?  seems we are all the same but timelines for meds a bit different. I have been lucky, but these girls in this site have been great for me!!  It is so scary and having support helps so much. Yes      coming off to lower doses is hard,, mood swings,,depression, etc hardest for me, plus going thru major challenges in life at same time..

  Just looking forward to being off everything. Keep talking,  ask your DR to maybe check levels more often.. 60 ,mpg is a lot if levels are normal. but I'm just comparing to others stories..  I do to know if it helps, but I have been eating all foods to boost immune system and reduce inflammation, loosing weight , never gained and DR seems shocked at how quickly my numbers returned to normal. no wheat, sugar,dairy,, I've done nothing but research for 2 months,, because I don't want to go on this drug ever again and I have been lucky so far.. I just want normal again. 

thanks everyone for being here.. Let's keep sharing!! And I wish you get down soon Nana... You and I are both new to this.. All same stories, different scenarios.. It does get better.. Wishing you get lowered sooner than later,, lower dosages aren't as bad I hear, but coming down is put fun, but it is a light at the end of the tunnel......  

Hi Nana from my experience with my child having AIH for almost 2 years I would say it totally depends on what condition your liver is in on presentation of your biopsy as to how high a dosage treatment is.  Hope this helps eliminate some confusion with everyones doses of meds being different best wishes for everyones journey with this terrible disease

Hi , well I must say there is a light at the end of the tunnel after all ! I was able to wean off the prednisone, which I hated ( I got a bunch of the side effects), AND I am no longer taking AZA either . I started taking a beet-orange and carrot juice every day ( which supposedly boosts the immune sistem and has a bunch of antioxidants ) . I have been completely off meds for about 8 months now , and all my tests have come back normal for about 10 months . I am at my normal weight , and am back to living and feeling healthy . My doctor even gave me the ok to drink alcohol ! I try to eat healthy and more organic , and avoid stress ( I think in many cases this is a trigger, or at least a big factor ).  I hope all stays the same and I won’t have a flare up ... will keep you posted ! 

Hi that’s awesome. I also have AIH.  I am living a clean life too. Organic gluten free. Tumeric etc. I am now on 5mg of prednisone and 50 mg.  Hate these medications even though they did save my life. I am in remission.  My husband feels I need to get off these medications ASAP!!  He thinks I can do it through diet etc. he says food is the medicine. How did you do it? How high was your liver enzymes etc.  it’s going on 5 months for me. I also take vitamin supplements.  I need help!!  Also how do you make that drink. Thank you. Congratulations. 🎈🎊