Autoimmune Hepatitis, Anyone Else Out There?

[Brooklyn528]

Hello. I'm posting today because I'm trying to cope with my new autoimmune disease, Autoimmune Hepatitis. I just feel like telling my recent story might help me a little. I know it's lengthy, but thanks in advance.

Ever since my diagnosis, I haven't been in the best of moods. I have been on Prednisone now since 9/26/09. My official diagnosis date is 9/24/09. The prednisone side effects are almost worse than just having the disease. As of my diagnosis date, I was doing alright actually. I hadn't had any outward symptoms really. Then, on 9/26/09, the day that I started treatment, I was jaundiced by noon. I mean noticabley jaundiced to everyone else. My eyes were orange almost. My side effects started from the pred, too. I was up all night and tired all day. My anxiety was at it's peak and my mood swings were horrid. I was also experiencing a lot of spotty abdominal pain of all types, stabbing, burning, and itching, and fullness and pressure agianst both sides of my rib cage. I also got hit with a horrible sinus infection and bronchitis. So, I went to see my primary care doctor. He prescribed me to Zoloft along with the Trazedone I was already taking to sleep. Miralax because I was really constipated on x-ray. And an antibiotic for the infections. So, through the first few days of October consisted of Miralax, MOM, and as much rest as I could get. I started getting cleaned out with the combination of the two, but I was still experiencing pain and fullness as of Friday of last week. My sinus infection had improved, but not gone. So, Friday night, I had gotten the kids into bed by 9, my boyfriend had gone to a friend's house to play cards, so I just settled in on the couch. After two hours of sitting at rest, my heart literally started jumping out of my chest. I could feel my heart beating in my chest, HARD! Then, I could feel my heartrate all through my body. I decided that something wasn't right, and that I needed to be seen in the ER. I called my GI and Hepatologist On call. They wanted me to come there, but there is about an hour away. So, I said I would go to my local ER to be seen, and if needed, I would come up there. I went to the ER. They checked me in and such. My blood pressure was at 135/75 which might not seem high, but it is for me. I have run a low blood pressure all my life, usually 80-90/50-60. They did bloodwork and an EKG. It all came back fine, but my heart was still racing. They gave me two bags of fluid at a rapid rate, some IV Ativan, and Toprol, a medication used to regulate high blood pressure. After all this, my rate slowed, and they sent me home with a prescribtion for Toprol and a diagnosis of SVT, Supraventricular Tachychardia. I wasn't happy with this, and did not agree. I didn't start taking the medicine. Saturday evening, after sleeping all day, I got up about 6 and took all of my medicine and such. I was still having the abdominal pain and fullness, they didn't check my stomach at all the night before. No examine really. On top of that pain, I started having pain in both of my shoulders. I don't have any shoulder issues so this suprised me. So, I just took it easy that night and didn't do much. The next day I got up and went about my day, but I was still having all the pain. I was getting good results from the Miralax and MOM, so I knew it wasn't constipation anymore. I called the GI oncall again, and actually spoke with the same I spoke with on Friday. This time he said that needed to come up there and be seen. So, I made the arrangements for the kids, and my mom, grandmother, and I headed to Indianapolis. When I got up there, the doctor came in and did a physical exam. He told me that my liver was very enlarged and so was my spleen. Since I'm being treated for AIH, he said they had already decided that I needed to stay in inpatient. They did a CT scan that night and bloodwork. The next day, Monday a whole team of doctors came to see me. They told me that they were worried about my gall bladder and spleen. They said they were wanting to do an ultrasound and an EGD as soon as possible. So, I got these things done, and stayed that night. On Tuesday, the doctors came back to see me. They had actually found a lot of things. On my EGD, they found active bleeding in my stomach, stating that it was oozing blood and very friable looking. In my duodenum, they found two ulcer that were not bleeding. They took biopsies, but results haven't come back on those yet. My ultrasound showed that my liver, bile ducts, gall bladder and spleen are all enlarged because aren't draining like they should be. They decided to put me on some meds to control all these things until I get to see my hepatologist. So, now along with 40mg of Prednisone a day, I'm taking Ursodiol for the problem with the bile ducts. I looked it up, and it's a medication used for primary biliary cirrhosis and has to be taken for at least a year. Wonderful! I'm taking Prevacid for my angry stomach, I'm sure I'll be on it for awhile. Oxycodone for pain. I also take Zoloft, Trazedone, and Buspar to control my Prednisone side effects, Miralax, multivitamin, and calcium. They released me from the hospital on Tuesday evening, and I came home. Now, it's Friday and I'm feeling horrible. I'm exhausted and my joints are hurting and locking up. I feel like an old woman, but I'm only 24. I have to keep telling myself that I'm only 24. With all that, my children are in the process of being diagnosed with Celiac Disease. So, I'm doing daily journals on them. Then, just the cherry on top, my boyfriend doesn't understand whats going on at all I don't think.

I just needed to tell me story. Thanks to anyone who reads this. Your support is much appreciated.

[Brooklyn528]

Also any tips on warding off the Prednisone side effects would be great! The joint pain is getting really bad and my hands shake all the time. Just wanted to add that.

Thanks

Brooklyn

[nasalady]

Hi Brooklyn,

Welcome to the board!

But I'm so so sorry to hear about the circumstances that brought you here!

You're definitely not alone; I have autoimmune hepatitis and take prednisone, too.

Up until April 2008, the only AI diseases I knew I had were Hashimoto's thyroiditis and psoriasis, plus asthma. I was OK with that...I felt I could deal with those. But in April I started to think something else was wrong, made an appointment to be checked out and found out that my AST and ALT were each over 1400! I had a liver biopsy in May and was told on June 6th that I had AIH. Started on 40mg of prednisone and 100mg of Imuran the next day.

But that was just the beginning...in July I was diagnosed with fibromyalgia, in August with rheumatoid arthritis, and finally by November I went gluten free as my gastroenterologist was fairly certain that I had celiac disease as well. I've been in a wheelchair since August 2008 because of severe back pain if I walk too far or stand too long (probably the fibro)....also because I had lots of neuro symptoms like vertigo and peripheral neuropathy (that I've blamed on celiac, mostly).

I did start to feel better on the gluten free diet; my gastro symptoms mostly went away and my headaches and vertigo got better too! But in the past several weeks I've been feeling worse. I developed the lupus "butterfly" rash on my face and high levels of anti-double-stranded DNA antibodies in my bloodwork. My rheumatologist has now started me on Plaquenil, because he thinks I may have lupus and/or lupus/polymyositis/MCTD.....diagnoses pending. I'm also having weird vision problems (vertical double vision??).

I have tapered down to 5 mg prednisone at this point, so maybe that allowed a lupus flare-up? I don't know.

Here are all the meds I'm currently on: Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec. They all have their side effects; I'm really sorry I can't tell you how to minimize the effects of prednisone....I wish I knew! Maybe someone else on this forum has advice on that.

In any case, it's such a good thing that you're getting your kids tested for celiac now; please be aware that the bloodwork and biopsies are frequently falsely negative in young children. My granddaughter Carly was tested (blood and biopsy) at the age of two; both were negative. By the time she was three, she looked like a child from a refugee camp, nothing but skin and bones, with the bloated belly of starvation. Her doctor re-did the biopsy and this time it was positive! She's gluten free and healthy now!

You should know that untreated celiac disease by itself can open the door for other autoimmune diseases to develop; please read the following article: Open Original Shared Link

I've probably had celiac most of my life. I was told it was IBS for thirty years, of course. This is the explanation for someone like me, with TONS of AI diseases. It's not lightning striking 10 times in the same spot.....untreated celiac created the perfect environment for all of these other autoimmune diseases to develop, because I wasn't gluten free because I had no idea I had celiac disease!

Which is why it's actually good that you're finding out all of this now, at an early age, instead of not knowing anything until you're 52!!

I should also tell you that I have discovered recently that just gluten free isn't enough for me; I have to be completely grain free (no rice, sorghum, millet, corn, etc.). So I'm now using coconut flour and almond flour exclusively and trying to get used to it. If I have to I will go dairy free too....hope I don't have to!

In any case, this is a wonderful place to ask questions! If you want a forum specifically about hepatitis, I've also been participating over at Open Original Shared Link. They cover all types of hepatitis though, autoimmune, hep C, alcoholic cirrhosis, etc.

Take care....and please keep us posted on you and your children!

JoAnn