AIH Newbie :)

Hi all, I’m new to the forum and new to the world of AIH…whether I want to be or not. Up until last summer I’ve never had more than chickenpox and mono when I was a kid. I’m in my mid-thirties and have lead a very active life working full time plus a part time, self employed business and running a small farm on my own. Looking back I’m thinking the stress of spreading myself too thin may have contributed to my “crash and burn”. After feeling ill for almost 2 weeks some friends convinced me to go to the ER. Blood tests showed my ALT and AST both over 1000. Tests were ordered for viral Hep and I was sent home. In the following days I developed jaundice and returned to the ER. Enzymes were hovering around 2000 (this was 5 days later). I was almost sent home again….I am in Canada and our health care system is not the greatest at times, especially in rural areas….however the hospital’s internal specialist was notified and she had me admitted right away. I was transferred 3 days later to the city hospital and by that time my ALT topped out at 2945 and AST 2888. At the time I had no clue what that meant. Actually at that point I was developing confusion from the toxins and not much made sense.

Four days, dozens of blood tests and a liver biopsy later I was diagnosed with AIH. Talk about a punch to the gut. No history of autoimmune illness in my family and up to this point, other than being a bit overweight, I was healthy. I was started on 40 mg of Methyl Prednisolone (that is the steroid of choice here in Canada for liver inflammation) and spent another 9 days in hospital.

A few days after I returned home is when the extremely strange and downright scary stuff starting happening. I have never taken any kind of drug before aside from antibiotics so side effects were not something I had experience with. I was told about the possibility of water retention, moon face, acne and restlessness….but I was not prepared for what actually happened. I have been told now by the hepatologist that I am just extremely sensitive to the medications. It started out with night terrors, hallucinations, hearing voices and watching the walls move in my bedroom at night. I was alone and completely terrified. I could not get in touch with the doctors and there was actually confusion between them as to who was following my case and it was nearly a month before it was sorted out and I got to talk to somebody…..all the while I was on this high dose of steroid which was making me crazy. When my dose dropped those things stopped but then a whole myriad of other side effects started. I had terrible tremors, mood swings, insane anxiety, uncontrolled vocalizations and movements. I was sleeping maybe 1 hr out of 24 and could not sit still. I could go on and on about the crazy train I was on for the first 2-3 months. It’s something I never want to experience again. Once I got down to a lower dose, around 12-16 mg, I started having major issues with my short term memory and cognitive functions which has still not completely resolved itself. I’m an intelligent person, work at a University as a researcher and instructor. The effects on my brain have left me feeling extremely frustrated and embarrassed. I’ve also lost over 50 lbs. I know, abnormal for being on steroids, however a lot of that has been muscle wasting. I’ve been off of the predinsolone for almost 3 weeks now and maintaining on 75 mg of Imuran. Having blood tests this week to see if my enzyme levels have remained normal since being off the steroid.

Now I am dealing with an immense amount of muscle and joint pain. It is crippling. Just the basic chores of feeding my farm animals everyday leaves me near useless on the couch the rest of the day. I can’t work and feel completely frustrated, angry, scared, depressed, you name it. I don’t have a great support system so I’m glad I came across this forum. Even with a crash course in AIH and the medical system the past 5 months, I still have a lot of questions. I sit and wonder if I’m ever gonna be “myself” again and be able to return to doing the things I love. I need to work and I need to have my animals. Honestly, they are the biggest reason I kept plugging along each day and they helped me deal with the insanity. I would be devastated if I had to give up my farm.

I am trying to do everything I can to heal myself. Started eating healthy as soon as I came home from the hospital, exercise when I physically can, do yoga to relax and relieve anxiety, go for regular massage and acupuncture treatments (which really help me) and see a psychologist. I’ve always been an anxious person but I do find that the anxiety has worsened since the steroid treatment. I’m trying to remain positive and my friends would tell you I seem to have it together...got a smile on my face and being my happy-go-lucky self. But I can’t help having pity parties for myself some days and have found myself falling into a dark place more than once.

So that’s my story…the condensed version. I’m just looking for people to talk to and share some of my worries with…people that understand because they are living it too. I hope I can contribute to helping others as well. If you have a question about crazy side effects…I’m your gal! I think I’ve experienced them all

Hi there and welcome

You sure have been through it haven't you?

I too suffered terribly on pred (and we use prednisolone here in UK as well). I think your extreme symptoms like hallucinations are called steroid psychosis. I confess I didn't have that - but the rest of the side effects are very similar to what I had so I can commiserate. I am slightly jealous of your weight loss though! I put on over 20kg on pred.

Before I forget - should a doctor suggest that you need steroid treatment again for your AIH do please ask about a different steroid called budesonide. It is a tablet but far less gets into your system than with pred - most is absorbed in your liver and intestine - so the side effects are much reduced. It isn't for everyone and the dosage can't be adjusted as well as the pred but I took it during my last flare and it was heaps better than pred for me.

The muscle pain is probably caused by coming off the pred. usually I would suggest going back on it at a low dose and weaning down very very slowly but given your experience I think that could be unwise. I can only therefore suggest gritting your teeth and sticking with it perhaps with some pain meds. It does go away in time.

I found it took a good few months to feel anywhere near normal again - actually to be honest I think it took me a year to fully feel OK. But I did get there gradually improving week by week. I too found it difficult to function at work as my thinking was slow and I was frankly acting out of character. I took a few people into my confidence and we had a system worked out that they could tell me in meetings if I was starting to act strange. I also had lots of notes to help me. My ability to read something and retain it just went for a time. It did come back though.

My history is that I was diagnosed with AIH in 1999. Since 2003 I have been treated with an immunosuppressant called mycophenolate mofetil (CellCept). It works in a similar way to Imuran which I reacted to. Since then I have had one flare requiring steroids when I took budesonide. My readings are creeping up a bit now and it may be that I will need to go onto low dose steroids long term - as many people with AIH do. Had that been prednisolone it is a thought that scares me but with budesonide I know it is bearable.

It looks to me like you are doing all the right things. It often does take time to recover from that initial attack. Hang on in there. I got back to full time working and going on lots of active holidays and have found AIH doesn't hold me back.

Dany is one of the moderators here and she will be along soon I know with more advice. There is also a search facility on the forum you may care to use. My email is in my profile (just click on my screen name) if you ever want to email me.

Do ask away with any further questions.

Ann

Hi Farmchick, welcome to the HW Hepatitis Forum. Ann has been very helpful and it sounds like your docs are on top of this. Many remain undiagnosed for sometimes. I sent my co Moderator Dany an email earlier and she should be along as well.

My experience is mostly with Hep C and liver transplantation, so I cant offer much help...other than to say that the very high liver function numbers seem almost unimaginable. You must have been very concerned and relieved to have a firm diagnosis. The meds are so hard to take. After transplant my partner was on prednisone for a long while and never slept and had horrible tremors. I have had to take it for COPD from time to time and it makes me nuts. I don't sleep and they weaned me too fast the last time and I had a 12 day migraine...I'd almost rather not breathe than take that stuff. I wonder if one of the alternate meds would work for breathing problems? I'll ask in another forum.

Best to you as you get this flare under control.

Hugs,

Thank you all for the welcome and for the information about the Budesonide. I definitely will be discussing that with my hepatologist in the event I need steroids again.

AIHer - That weight loss is about the only good thing I can say came from the pred. Aside from reducing the inflammation of course I am told that was a result of the pred exacerbating my natural OCD tendencies. I got it in my head that I had to get healthy and loosing weight was the top of the list. I actually came home and threw every bit of processed food out of my house and started fresh. Luckily I grow all of my own meat, eggs, vegetables and some fruits so I had a head start in the healthy food supply.

I'm sure glad I didn't understand what the bloodwork meant at the time I went into the hospital, because I would have been in a panic. I know the pathologist said that he had only ever known of one other case of enzymes that high, and that was a patient in Toronto. I remember being wheeled into the liver and kidney transplant floor and as we stopped at the nurses station, 8-10 of them all jumped up and said "Oh, this is so and so from...." I felt like the bearded lady in a circus sideshow I also vaguely remember practically begging the EMT not to leave me there. haha I saw a lot of medical students during my 2 weeks there, they were very interested in my case.

My steroid taper was really quick. I went from 12 mg to 0 in 3 weeks. But I will take the physical pain any day over the mental crap. I know everyone is different and it depends on how long you have been on pred (in my case it was only 4 1/2 months), but what is a reasonable amount of time I should expect to have this joint pain?

Now that I am getting over this initial flare I'm beginning to start thinking about the future. I find it very difficult to accept that the reason I developed AIH will probably never be know. I am a "why" person, I work in the science field so it's my nature to always ask why. Not knowing those answers drives me bonkers! I'm obviously also scared of having another flare and without knowing what causes it, how do I avoid one? For those of you that have or have had flares, do you know what triggers it? How advanced does it get before you know something isn't right? I don;t want to live in fear but I also want to do my best to avoid getting sick again.

Dany - I go for bloodwork tomorrow and expect to get a call from the specialist that evening. She doesn't know yet about all the troubles I've been having since coming off the pred. I haven't spoken to her since mid Dec. I actually went to the ER a few days after Christmas because I was so ill. I started having symptoms very similar to when it all started in the summer. They checked my bloodwork and everything was okay (ALT 38, AST 37) so just figured it was steroid withdrawal.

Got my blood test results back on Friday. Everything is still holding AST 32, ALT 29 BiliTotal 14 and my platelets are finally up to the bottom end of the normal range (151). They have been low for the past couple months. Did not get a call from the hepatologist however. She only tends to call me if there is a problem...busy lady, I understand that...so I guess I will wait and talk to her about the joint and muscle pain at my next appointment in February. I know what she is going to tell me to do for the pain, and she knows what I will say to the solution I rather deal with the pain as opposed to going back on the Pred.

I've tried some Voltarin for the aches but don't find it does anything. There is no way I will take any kind of prescription pain med, crips I won't even take Tylenol. The only thing that ever worked on my aches and pains was Advil and I've been told I can't take that. I will just stick to taking it somewhat easy and having regular acupuncture and massage treatments.

I'm almost certain that stress is the trigger for me. I was under a huge amount of stress, both physical and emotional/mental, for about 3-6 months before everything went haywire. For me I think it's going to be a delicate balancing act of keeping myself healthy but not allowing my anxiety to get me so worked up about it that I cause myself more stress. I also need to make some changes in my life. Distance myself from some very toxic people that have, and continue to put me through a lot of misery. It's probably inevitable that I will have a flare at some point. Just hope it's something that can be brought under control quickly.

Thank you all for the advice and support.

Good to hear the blood test results are so good. Platelets frequently hover round the bottom of the normal range I find.

Pain meds wise, doctors vary a bit in advice but I have been told I can take paracetamol (acetaminophen) but should not take any NSAIDs such as ibuprofen, diclofenac, aspirin etc. and when I need stronger pain relief I can take codeine or tramadol. Luckily I only need pain relief now and then.

(I have used generic names as we have different brand names here and I confess I get confused).

Ann

Hey Farmchick,

AIH here, and have those aches and pains as well, after a year. I went from 20mg pred to 5mg within a couple of months. Im 48 and found my self in about the same situation. I was diagnosed 2010 and so far hovering around clinical remission and have been for over a year now. Ultra sound tomorrow! I go every three months for ultrasound with a follow up with my G/H doc. He, because of the aches and pains approved up to 200mg of tylenol and 400mg of advil a day for me. I told him no narcotics. I have yet to get back to a regular work week (40 hrs). I do stretch exercises and light workouts on stationary bike. Thats about as much as I can handle right now. It has gotten a little better (e.g. pain). When I started researching this AIH the websites were no consistent with the information about AIH. Now, you can go to any one of them and find they post the same information on AIH. Websites: emedicine, medicine.net, mayoclinic, webmd, and american liver foundation to name a few. It seems the western U.S. had better information on AIH than the eastern U.S. at first. I went to my new established family doctor about this pain and she prescribed Mobic, an antiinflamatory non-narcotic med. I took one (7.5mg) and it took away the pain for a few days but made me droggy. I made sure before establishing this doctor she had experience with AIH. Don't give up! It does get a little better and it varies from person to person to what degree and at how fast.

Jesse
AKA Butch

FC...anything new? ML

FC,

I understand your troubles but can you change GPs?  A new GP should be happy to refer you to someone else.  And then file a complaint against the old one.  My insurance wasn't going to let me change primary offices until I wasn't "under care" any longer but I told them I had a chronic illness so would never stop treatment and come hell or high water they were going to allow me to change doctors...so they did

Then I filed a complaint.