Learning To Live With Aih

Hi! I found this group while trying to find out how others are living with AIH.

I was diagnosed with AIH in December, 2011, although I believe it started earlier that summer. I was going through a stressful situation on top of an already full life and suddenly developed a terrible rash on the back of my hand that went up my arm and over my shoulders to the other arm. At first I thought it was a reaction to sun, but that would be really odd for me and it wasn't eczema.

The doctor talked to me about my work and what else was going on in my life & said he was going to sit back and listen while I talked. I ended up unloading a big burden. He talked to me about taking time to care for myself while I care for so many others. (Ironic I once taught about vicarious trauma and self-care)

I was given prednisone for two weeks which helped, but it didn't completely clear until the third week by which time I was on vacation.

Later that year in the fall, I experienced another more stressful situation and within a week of that incident, I was in a full blown flu like illness, minus a fever. I was exhausted, aching and sore all over and I just wanted to sleep. Because of my situation I was already on leave from work, so I was able to rest a lot, but I went back to the doctor who ordered lab work since my symptoms were so broad. That was in November 2011 and the Liver enzymes were high which lead to an ultrasound and later a biopsy that confirmed AIH.

I started with a combo of prednisone and imuran with a slow decrease of prednisone. By March I was on imuran alone and continued on 50 mg from March through October, but it seemed that every two months I was feeling flu like and fatigued, but liver panels would come by ok, but a few points higher each time so doctor increased imuran to 100mg.

At 100 mg I was always nauseous and at times vomiting. I just started 75mg last week and hoping the nausea will subside. I also have lots of joint pain, swelling and stiffness, especially in the morning, but I've been tested for RA and shown to not actually have RA, just the manifestations of RA, so no bone deformity, but everything else.

AIH has changed my life in so many ways. My family is not use to me being sick. I still have a hard time talking about it. Most people don't understand what AIH is and because I don't look particularly sick (people who know me can tell), it's harder for people to know how serious it is to have AIH.

On YouTube I found a video of a UCSF doctor talking about AIH and other auto immune disorders and I'm looking into the other treatment meds she talked about in case I continue to have problems with imuran.

I have learned so much from other people's stories and I was looking for support from others dealing with AIH. I've not been working because I was missing so much of work. I returned for a short time and then had another bout of symptoms and on 11/30 stopped work again. I found this group on 12/2/12.

I really believed that I would be completely better by this time. I didn't expect to be one year into this diagnosis and still feeling bad and still not working.

I'm more hopeful for the upcoming 12 months because I've learned more and I have the possibility of changing doctors and finding a more proactive specialist. I also started a light work out twice a week and plan to go back to walking regularly beginning this week.

Thanks for listening to my story.
1Cor29 1Cor29
41-45, F
5 Responses Dec 4, 2012

Thanks for sharing your story. I'm at about the 6 month mark after my diagnosis and can relate absolutely.

you are right when you say people dont realise what it is its a lonely time i do have family around but its still like they dont fully get it x

I was just diagnosed and they can't get me into the GI Dr. until Sept? Do you have any advice on what I should do?

Thank you, ISEW57, this is encouraging news. Hmmm, over two years, huh?

Well, I'm growing in patience because I really thought one year would have done it and I'd be in a "maintenance" phase. Now I'm having to wait and see how imuran at this new dose will work for me, but hearing your story lets me know a little about a time line.

Drs have been adjusting the dosage amount for the imuran. I was on 50mg a day for about 6 months then 100mg a day, now back down to 75mg a day. I'm always battling nausea and at times vomiting probably from the imuran. It seems a LITTLE bit better when the dose went to 75mg, but that just happened so I need to see how I'll feel in about 6 weeks.

I'm not on prednisone any more, but due to joint pain my drs offered me methotrexate 10mg once a week. I'm praying/thinking about it because I don't want to add another med so I'm weighing the pros and cons and how much of the joint pain right now is tolerable and what may subside over time as the AIH gets more under control.

Hearing your story gives me hope that some symptoms will subside, that it won't be like this all the time. Maybe I won't need the other med, that would be good news too. :) Thanks for posting your response you helped fuel the hope I have. God Bless You!

1Cor29 What you are going through is not fun nor is it easy. I was diagnosed over 7 years ago and it took over two years for my symptoms to subside. Although my liver test levels are near normal and I am only on 25mg every other day of Imuran (azathioprine) I have days when I don't feel very well but I know that the feeling will subside. I also had many days of aching joints and I felt like a very old lady while I was going through the prednisone/azathioprine dual treatment. The joint pain has subsided substantially. Excersize is very important so keep up with that. I hope that you will feel better soon. It seems from my experience that you will feel better. There still does not seem to be a cure but there may be relief for you.

ISEW57, I'm at the stage you're at now. Ive been diagnosed for 4 years and although it's hard, it gets better. Being 17 and having those days where you feel like an old lady who cant walk isnt the best of times, but you do get over it! It's nice to see someone else in my boat, who is living comfortably and is not in pain anymore!