Autoimmune hepatitis

[SusanASA]

Recent dx of Autoimmune hepatitis.  Started 60 mg Prednisone, dropped to 50 mg one week later.  Now into second week of 50 mg.  I do really well in the mornings (sleep a lot) but by 5PM feel like I am on my death bed again.  I try to take the Prednisone at the the same time everyday.  I also have all the side effects of Prednisone, still have a rash/acne but the itching has stopped.  Chills/sweats at night.  Big thing is not being able to taste.  Water/liquids are horrible as is breads.  I feel that I am not eating enough to help myself fight the illness.  The best thing I have found is Lime sherbert and ginger ale together like a float.  I have never been sick like this before and it is scarry.  Will be having a liver biopsy sometime in February, after white count goes down.  Can anyone share info about length of illness, if you have the taste problem etc.  It would be greatly appreciated.  I just want to have something to look forward to and get my life back!

[SusanASA]

What has happened to the Website.  It has taken me 30 minutes to get to this point.  I can't find anything where I sent you guys an update on Monday.  Usually, it takes about 30 seconds to find you.  

I had liver biopsy yesterday, not to bad.  I did not have the arm pain you mentioned.  Should know results Friday.  Will try to get back in touch.

[SusanASA]

Hello ladies,

Just a note to say how grateful I am to both of you for your encouragement and well wishes.  I have the liver biopsy tomorrow and am looking forward to the results.  Hopefullly, there will be nothing new to worry about.  I will remember what you said about the Tylenol.

My days are getting better.  I don't sleep quite as much during the day, but at night I hardly sleep at all.  And the sweats, I didn't think a person could do that.  My tastes are  beginning to come back and you are right, I could eat everything in the house.  I am beginning to gain weight.  Down to 40mg Prednisone now, and I have been tested to see if I can take the Imuran.  Dr. says after results of biopsy, he will start me on this.  Still not able to think about going back to work.  It is a chore to just get dressed.  I did put on makeup for the first time this weekend.  It made me feel better not to look in the mirror and see all yellow.

Hope ya'll have a good day and I will let you know about the biopsy.

Susan

[SSM]

HI SUSAN
WHAT IS WRONG WITH YOUR FATHER IN LAW? DOES HE REQUIRE A LOT OF HELP? BEING LIFTED ETC?  CAN YOU GET HOSPICE OR SOMEONE TO COME IN AND HELP?
i HOPE YOU'RE FEELING BETTER.
i AM STILL FINE. MY COMPLAINT THIS WINTER IS MY BACK AND RIGHT FOOT. i HAVE SCOLOCIS AND HAD SHOTS IN THE SPINE BEFORE WE LEFT VERMONT TO COME SOUTH BUT THE SHOTS DID NOT WORK THIS TIME SO i HAVE A LOT OF PAIN FROM THAT. IT CAUSES SIATICIA AND IT AFFECTS MY FOOT AS WELL. i DON'T WANT TO GO TO A SPINE CENTER DOWN HERE SO I KEEP PUTTING IT OFF  AND HOPE i CAN WAIT UNTIL WE GET BACK TO VERMONT MID-MAY. THEN i WILL GO IMMEDIATELY AND SEE WHAT HAS TO BE DONE. IF MY BACK AND FOOT FELT GOOD i WOULD FEEL GREAT.
i THINK i AM COMING DOWN WITH A COLD. EVERYONE HAS ONE AROUND HERE IT SEEMS. i TOOK AN ALKA SELZER COLD TAB AND HOPEFULLY THAT WILL HELP TO KNOCK IT OUT. IF i CATCH IT FAST IT USUALLY DOES.
ANYWAY-- JUST WANTED TO SAY BEING PATIENT IS DIFFICULT BUT DO IT ANYWAY AS IT ONLY MAKES YOU FEEL WORSE IF YOU FRET ABOUT IT. i JUST SAID WHEN i GOT DIAGONOSED" THIS IS MINE-- i BOUGHT IT AND I WILL HAVE TO DO THE BEST i CAN WITH IT". WITHIN A YEAR i WAS BETTER AGAIN. YOU;'LL ALWAYS HAVE IT, AS WILL i , BUT KEEP PLUGGING ALONG AND YOU'LL BE BETTER TOO.
TAKE CARE AND ENJOY THE DAY !!
SHIRL

[SusanASA]

Thanks Shirley,  You have given me something to look forward to.  I still have the night sweats, but no more itching.  I am also losing weight, because nothing taste good almost to the point of being nausous.  So I don't eat very much.

I am trying so hard to be patient, it's just not that easy!  And believe me, I do know there are a lot more worse illnesses that we could have.  Today, Hospice is coming to take care of my father-in-law.  Right now, my  fear is that my husband is going to have to go thru all this without me.

[SusanASA]

Hey girls,  Really bad day yesterday (depression like  I have never had.)  I'm just not used to anything like this.  I am always the one taking care of everyone else. All my levels were down this week, still on 50mg Pred.  Go back Monday for next labs.

Please give me a clue as to when ya'll began to feel human again.  I know everyone is different, but if I could have a bit of something to look forward to, maybe I wouldn't be so depressed.  All the dr. will say is be patient.

It is snowing today & everyone gets to go outside & play.  What a bummer...All I can do is watch the birds at the feeders.

[SSM]

hi everyone
the snow sounds pretty -- in vermont where I am from I am sure it is snowing also but I am in florida now and the weather is great here. i do like the snow as well as long as i don't have to go out in it.
I started feeling better about 6 months into the treatment I think. I am not as good as maari and never kept the journal. thinking I would remember it but of course I didn't.  I remember one day telling my daughter I felt different inside. I think that was when the attack slowed down. you actually will start feeling better in a short amount of time I think .. you still have to deal with weight gain. and swelling of the face etc.  all temporary.  I had a lot of night sweats and itching arms. ( baby powder helped my itch).  I feel great now -- Other than having to pop a 50  ml  azathioprine pill once a day I hardly know i have AIH.  I realize it can flare up -- maybe it will and maybe it won't. my doctor said they don[t know about that as they really don't know why it did it to begin with.
I still get tired more easily I think but you will be able to work.  it does take patience.  it's a slow and steady process. in the end you will feel good again.
hope all is well maari.  
I am busy teaching painting one day a week. have had to add a day occasionally as my classes were too big. had 17 last time and have 12 tomorrow and have an extra class schedlued for wed.
I am learning to do paper piecing quilting and also swedish weaving from some of the ladies in the park. some of us get together twice a week to do our thing ! I've also started the quilt for my grand daughter. also a watercolor is started so I am keeping busy !! ha !  
take care --- don't let it get to you Susan. time passes fast.
I just saw a gastro-hepatologist down here. for a separate issue. we talked about my AIH a little. he said " there are a lot of diseases a lot worse than AIH" and i told him I agree. and I DO  agree. at least this one , altho it takes a little time, you  do learn to control it and feel good again.
shirl

[Maari]

Hi Susan and Shirl
Susan I am a stay at home Mom.  I am the primary caregiver for our severly multiply handicapped daughter. Michelle is 27 but looks like she is 8, she weight 65 pounds and needs care like a baby. She has 18q- syndrome, another thing not many people have heard of.  I know what it is like to be a care giver.  When I first got sick, I could not lift Michelle and I slept most of the time.  After being on pred and imuran for about 3 months and my LFT's were coming down in the normal range, I could lift her again. I felt much better as the LFT's got back to normal

Some folks on the other forum have talked about going back to work, part time at first. The fatigue stuff gets better, but it takes awhile.  In my case I have most of my energy back, but I seem to have a limited amount.  When that is used up I hit a wall, and must sleep.

About the heredity  of AIH, the uk site did a survey.  Alot of folks are of Northern European descent, and have a family member with an autoimmune disease. Their conclusion was that there is a tendenacy toward autoimmune disease in families, but not that it was inheirited. No one knows what causes it.

Hope this helps.  Take it easy and like Shirl says you will feel better again. It really helped me to talk with people who understand.  AIH certainly gives us a bond.  When I met Marcia in person , it was an instant connection.  Like I have a sister.  You are not alone. M

[SusanASA]

Thanks for your quick response.  It does make me feel better to know that someone else knows what it is like to have this.  I have same sides except  spider veins.  Maybe if it starts being under control I will be able to taste again.  I have a list of things a mile long that I want to eat.  Are you able to work?  I have been out of work for 5 weeks now and don't see any chance of anytime soon.  They are getting antsy.  My mother who is 81 has Rheumatoid arthritis, it makes you wonder if all this is hereditary.  Dr. says no!  My main problem is that I was taking care of my parents, working, 1st new grandbaby, Christmas.  Tried to push myself to far before going to Dr. When I finally gave up, he told me I had something viral and go
home, sleep it off.  By then the joint/muscle pain was so horrific, I thought I was going to break a bone.  That was a Friday and it was 2 more weeks before they had a dx.  Treated me
for Cytomeglia virus.  I do see gastro Dr. weekly for labs and I did learn early on the need to write everything down.  Like you I hope that goes away soon.  I will be in touch, stay well.

[SSM]

hi Maari
hi Susan.
My name is shirley and I also have AIH. I know Maari through e-mail. we write quite often.   it's nice to know you're not alone in this .
You sound like you are having a bad time of it Susan but there is definately light at the end of the tunnel.I never go to the Dr. when I should. Im a great one for waiting thinking it is just tired or flu or whatever--- however I had mentioned it a couple of times and two differnt Dr.s told me it was just because i am a busy person and so -- tired !!  oh well ---
when I did go finally I was so tired I could barely deal with it. then my urine turned a dark red /orange and i thought it awas blood so they rushed me in. that is when I found out it was more serious. i was sent to a hepatologist and he diagonosed me with AIH. I also had itching, my arm skin was starting to wrinkle bad and hang ! had night sweats , muscle and joint aches but I have that anyway so not sure if it is AIH related. my ALT and AST were elevated to the 1500's ! My DR. put my on 50 Ml of prednisone immediately as he was almost positive i had AIH and wanted the numbers to start coming down right away. they did do that. a couple of days later I had a liver biopsy and that confirmed it. the ultrasound biopsy by the way was simple for me, did not hurt and didn't take long. afterwards I had a strong pain in my right shoulder ( VERY COMMON FOR LIVER BIOPSY) and I was offerred tylanol but refused it. another time I will accept it -- the pain lasted about 1/2 hour I guess. nothing you can't stand but next time I will take the tylanol.
I had to get my labs done often. I was diagonosed oct of 2005.  after a couple of months he added imuran ( azathioprine) and the numbers kept coming down. a year later october of 2006 my numbers were almost back to normal and I was off from prednisone ! HOOray  ! now--- three months later I am still normal ( with 50 ml of azathioprine) and feel great. I did gain 31 pounds with the prednisone. my face swelled up quite a lot. that swelling has long gone since i got off pred. I still have the weight !!!  I can't exericise much as i have scolocis and a foot problem related to that. If I ever go on pred again i would try hard not to eat everything in the house -- it makes you hungry -
so -- anyway -- I.m like Maari-- in remisssion and feeling good. if I didn't have to
take one pill a day I might not know i had AIH .  you will feel better again but like my DR. told me -- you have to be patient. it is a slow process. he told me to do everything exactly as he told me and he would make me feel good again. HOORAY -- it worked !
Hope you feel better soon. I would pass on to you the same info he gave me.
prayers for all of us !!
shirl

[Maari]

HI Susan
I have AutoImmuneHepatitis, was dx in June 04.  I am seen by Family Dr, Gastro and liver specialist. I was started on pred and then Imuran was added.  Was on pred for 7 months and now on Imuran only. I am glad you will be having a biposy, that is the only way to know what shape your liver is in.  You will be given a grade and stage. You asked how long until you get your life back?  Each one of us is different, this AIH is caused by your own immune system being overactive. I wish I could say you will get over this like an illness, but this will probably be with you for life.  Like other autoimmune ailments arthritis, diabetis, asthma etc.  I have been in remission for about 1 1/2 years. As my doctors tell me you are in remission but you still have the disease.  The meds keep me in remission. There are some folks who do go into remission for life, but most will have a flare up. My doc think it is best not to allow a flare, but some folks want to be "normal" and are willing to take that risk.  That is a decision for you and your doctor.

I did not have a taste issue, but I did not want to eat.  Fatigue is part of AIH, as the meds work you will be less tired. My list of symptoms fatigue, night sweats, brain fog, jaundice, dark urine, pale stools. loss of appetite, joint pain, itching and spider veins. I also got a list of side effects from predn, most of those went away after weaning off predn. Often once you get one autoimmune disease, another will follow in my case osteopenia and arthritis. I am feeling pretty good most days, I have a new normal.  I do not have the same energy levels as before AIH, but I am about 90% and I can live with that.

I would reccommend that you keep a medical journal on yourself.  It helps in talking with Drs and the brain fog, it was frustrating not to be able to remember stuff.  I was soo glad when that went away.  I keep tract of all my labs and symptoms I notice.  Learn as much as you can about AIH.  I have met only 1 person who has this, but there is a site an all AIH site. It has lots of good info and support  You are not alone is their motto.  Please check it out  www.autoimmunehepatitis.co.uk   There are folks who have lived with AIH for 20+ years.

If I can answer any question please ask.  As I said I do feel good most days and almost forget about AIH.  You are not alone.

Hang in there
Maari