I don't know if I am as strong as some of you...

My Significant other was diagnosed with Autoimmune Hepatitis last week. He was jaundiced and fatigued, and of course we knew something was very wrong. He has had a biopsy and results showed things seem to be okay so far.

I am just....scared. I want him to be okay. He has started meds and seems to be improving, but I know this is something that will not go away overnight or anytime soon.

I guess I just have to hold on to faith that he will be able to manage this...

Thank you, Connie. He was in the hospital for a week and it was one of the worst weeks I have ever been through.

I plan to check out the caregiver's thread...and hope that I can get advice from other people who have AIH. I just hope and pray that he recovers soon...

Thank you so much!

one day at a time Rose...Sandi

Emma. Sandi, and Dany, thanks for your kind and encouraging words.

Dany, I am not familiar with his numbers...they just kept saying they were going down, so they let him go from the hospital. He is taking three meds...Prednisone, Azathioprine, and a stomach aid med.

He says he feels okay but has stomach pains off and on. He is still lacking in energy, too. Docs said it might take a while for him to regain some energy.

I try to be strong but hate seeing him hurting. It does not help that I am anxiety prone (I used to have bad panic attacks many years ago). I have come to control my anxiety/depression, but with this going on, I feel it coming back.

I want to be his rock, but it is hard when I am not feeling so great myself. I guess I need to try harder.

Rose, MamaLama from Fl here.

I know your feelings. And connie is right, if you are feeling anxious, best to see a doc. Ask for the help you need.

First time my hubby had symptoms and we started this journey was in 1988...before any real diagnosis, but was he sick. I was frantic then and am frantic now.

But now here it is 2010 he is very ill...but look at that timeline...lots of time to make a life and make good life choices about drugs, alcohol, healthy eating habits, smoking, exercise!!!!

Hubby did not make all the right choices and still he has had 22 years from the first "episode". He has raised a family, had a good career, has 6 beautiful granchildren, retired to Florida, played golf 3 times a week until this year! So...no complaints.

Though this year promises to be a rough one.

This site is the best.

ML

Rose,

As others have said...knowledge is key.  AIH is a fully treatable condition.  The earlier it is found the better and as I said before, it sounds like he doesn't have cirrhosis.  Sure it's scary initially but the more you know, the more you'll come to see that it doesn't mean that there is a defined time for him to be with you.  All patients are different but the majority of AIH patients lead perfectly normal lives with the proper treatment.  It sounds like they have given him exactly what he needs to be on.  Also make sure he speaks to the doc about calcium + Vit D supplements and a multivitamin.  He should have a baseline bone density scan as long term prednisone use can lead to thin bones.  He, absolutely, should not have any alcohol.  No over the counter medications unless he checks with his hepatologist (he is seeing a hepatologist, ya?).  When he starts feeling a little better, exercise will help him tremendously.  It also helps with fending off any joint/muscle issues.  Try to make sure there are plenty of healthy snacks around.  The pred side effects will kick in soon.  One is ravenous hunger!  At least it was for me but as I said, everyone's different.  There is a lot of water retention and weight gain with the pred but if the munchies are filled with sugary and fatty snacks...more than normal weight will be gained.  Weight gain for liver patients is an issue as you need to try to avoid fatty liver disease on top of all that.  Other side effects, irritability (not just sad emotional changes but anger as well), facial hair (not so much an issue with men but I sure wasn't happy when my chin needed waxing ), I developed a slight hump on my upper back, insomnia was a big one for me.  My hep prescribed different sleeping pills till I found one that worked.  I only took it every 3 days and dealt with some of the insomnia.  Had I known it was coming I would have planned on painting the house in the middle of the night...instead I lay there ticked off that I couldn't sleep     I did clean the freezer and garage out at 2 am on separate nights!  So it's kinda productive.  Have him rest/sleep whenever he needs to.  All the side effects were pretty much gone by the time I was decreased to 10mg.  Think positive thoughts as there is always a silver lining, we just need to look for it sometimes.

I am currently off the pred and only on azathioprine.  I was on pred for a total of 22 months.  The doctor's goal will be to get him off the pred as the long term side effects aren't good for the body.  If he needs to stay on the pred because his body won't let him off, then they'll try to maintain him on the lowest possible dose...again, side effects are gone on the lower than 10mg dose for most patients.  But that's to think about later.

Sorry for the long winded-ness.  Ask whatever you need to ask.  Oh and you said he's lacking energy?  The pred might change that soon enough.  It may make him feel like superman, unstoppable...that's where the insomnia bit comes from.  I had a huge amount of energy but then again, I know others who couldn't sleep at night but were super sleepy in the day.  For me it was like having 20 cups of coffee (that's how my hepatologist put it---I went in for a monthly check up when I was still on 30 mg and couldn't stop talking and told him he better lower my dose because I was way too wired).  So he did since my lab work was fine! 

Do you know how often he's going in for blood work?  He should have his labs done before any prednisone weaning.  Each drop in pred should be preceded by lab work.

OK...I probably should have avoided the late night java!  Gotta hit the hay before my 12 mile training walk in the morning...see...some people live perfectly normal lives with a chronic illness...I gripe about it occasionally when I don't feel like taking my meds or I wouldn't mind having a glass of wine with dinner...but it takes a minute to pull them out and I never ever have a hangover! 

Life could be so much worse so I am grateful that if I had to choose a disease, I may have chosen this one

Take care of yourself and see your doc if you feel overwhelmed...then think about how he may feel and that might help you put things into perspective...

Mamalama, Sandi, Connie...thanks again for the encouraging words.

Dany, thank you so much for taking the time to describe your experience with this condition. It gives me a better insight into it...and gives me hope. I like how you are still out there living your life (as we all should be)...

Yes, he does have an app.t w/ a hepatologist in two weeks. Hope things are well.

Just by reading your post, you have calmed my fears a bit and have given me knowledge. I thank you for that and will continue checking into this site.

You all are wonderful, caring people, by the way. I pray for those of you who are affected with illnessess as well.

Penny, I'm praying for you and Harvey.

I love Dany's attitude. She is such a trooper and so are you. I admire both of you. Thank you for everything you bring to this forum.

Emma, My heart goes out to you. I remember feeling the way you do after my husbands diagnosis. It was so hard to be optimistic. I'm getting a little better. You will too.

Your welcome Emma. Don't know if you saw my post regarding my husband on the caregiver's thread. I posted it this morning.

The sleep issue AIH patients have...and we are different than most other liver diseases...is that our disease is treated, initially, with very high doses of prednisone.  That causes insomnia and an overstimulation in general of many emotions (bouts of tears, anger, irritability).  As the level of prednisone decreases, the insomnia goes away.  My sleep patterns are exactly as they were prior to diagnosis and I am completely prednisone free...it's been almost 2 years.  I do get fatigued but I think it's because I am way too busy enjoying and participating in my life.  I am a single mom, I have a full time job and a part-time job (only a couple hours every other week...not much!), I am a volunteer for the American Liver Foundation and the American Cancer Society and I do numerous fundraising walks including the Breast Cancer 3-Day (a 60 mile walk).  I make an effort to get to the gym a few times a week but the only time I have for that is before work so I wake up super early, hit the gym, get ready and bring my daughter to school on my way to work...so I write my fatigue off to that!

There is life after AIH.  And yes, it's different for all patients.  I do believe there is some mind over matter to it though...I could have curled up and let it control/define me but I didn't.  I am very much happy to be here and I have a deep respect for living for however long we are here.  It can be taken away without warning and that's so much worse than living with a chronic illness where you can redefine how you want to live the rest of your life.

Post Edited (DGinSD) : 11/1/2010 10:04:06 AM (GMT-6)