Hi..my first time AIH and cirrosis of Liver

Hi;

 

My name is Linda and I'm 43 yrs old.  I have been diagnosed with Autoimmune Hep and cirrosis of the liver.  I guess I've had this disease now 6yrs and the drs nvr knew it.  They kept saying it was medicine induced.  I was jaundiced, had ascites and my liver enzymes topped out recently at 800plus. I have been hospitalized 3 time between feb and May.  I'm in treatment now; prednisone 20 mg and imuron; another drug for all the swelling, lasix for the water and prilosec for heartburn.  I'm so angry right now.  The prednisone has made me fat, I am growing facial hair, I have mood swings, I feel like my family feel like I am too young to be sick.  I admit I am a vain person.  I feel my looks and my life have been stolen from me.  Do the side effects of prednisone ever go away?

 

Linda,

I also have AIH and was 20mg of Prednisone for about 7 months before weaning down I gained about 20 pounds and had a terrible moon face but as soon as I started to wean the weight and moon face went away however, you need to be around 5mg before the symptoms disappear.  I was not able to take Imuran so had to stay on higher doses of Prednisone for a lot longer.  Still trying to be able to stay at 5mg but my levels seem to go up whenever I get to 5mg.

Jerry 1

Thank you all for your replies. I am seeing that there are other out there like me. I guess I was "woe is me" yesterday. I have so many questions about this disease and am trying to research as much as I can. Side effects like weight gain go away after a certain mg dosage is lowered but what about the facial hair growth or the hair loss on my head? Do these effects go away too? Does the hair on my head grow back and does the hair on my face go away? Prednisone is a steroid right? See, so many questions.

Thanks to all of you.


Linda

Linda,

Yup...I had all of those...even developed a hump on my upper back. I was plucking my eyebrows one morning when I noticed my chin was waaaay darker than usual! So I went crazy plucking that too! Then I waxed... Anyway, all of it goes away! I started being able to sleep again once I got down to the 10mg (had started at 40mg and know some people who started at 60mg) and then everything started getting better. Whatever you do, take your time weaning. Most people relapse when they are weaned off the pred too quickly. My whole pred schedule was posted on here and I was fully off 22 months after starting. I know how scary it is. I wasn't diagnosed with cirrhosis though so I can only imagine. However, even with some cirrhotic tissue, you can still be expected to live the same life expectancy as the average Jane with medication. I understand the frustration with looks and such as I had lost all the weight I had wanted to before I was diagnosed so going on the pred was hard for me as I gained a good 35lbs. I only have 12 to go to get back to where I was but I haven't been trying that hard!

Good luck with your treatment and ask any questions you need to! You are not alone! There are a few AIH'ers here and there's also a Yahoo group dedicated just to AIH....and there are 348 members there....so lots of us to get info from!

Take care,

Hi Linda,

I truly understand what you are going through.  As far as the amount of cirrhosis, as long as what is viable is still functioning (which your LFT's will tell you), then I don't think you have to worry.  Havign a chronic illness, you'll always worry to some degree but don't let it rule you.  There's a mom on the other group, her daughter was diagnosed at age 10.  She barely had any viable cells in her biopsy and the docs were going to put her on the transplant list but mom insisted they try to keep her liver.  She's 16 now, hasn't had a transplant and is a beautiful teenager.  They see lumps in her liver and believe that it is from the few cells that were OK that have started regenerating.  So fingers crossed that you will be fine.  Take care of yourself, eat well, exercise as much as you can and take your meds.  Check everything any other doc prescribes or any supplements with your hepatologist.  Don't drink even occasionally...some have been told it's OK after a few years in remission and only after the doc has said it's OK...I don't see the need to risk it or even bother...what's one drink in a few years gonna do for me?

The mood swings sucked!!  My poor daughter, I'd wig out then say, I'm really sorry, I think it's the meds!  It was worse when I couldn't sleep from the pred.  I tried several sleep meds but they all made me groggy and shaky in the morning.  So we tried Xanax.  It's addictive so I only took it every 3 days at bedtime and it was great.  I was calm in the morning and was rested.  That helped a lot!

What part of the world do you live in?

Dany and Shelly;

Thanks for your words or encouragement. I have been keeping notes on EVERYTHING and then asking the doctor when I see him. Certain days I see that I can cope with this disease and others ....well I get very depressed. I guess if I just got this disease it's one thing but I feel so angry with the doctors for just letting it go and letting me get to this point. I have to get passed this point. I want to start exercising, which is hard since I never really excercised before. Resting is hard. I feel like I'm always wanting to move around and I have such a hard time sleeping. The doctor here wants me to take a antidepressant because she says I'm depressed. The hepatologist says ok.. but I have to keep a watch on my numbers.

I guess every day will be a new day. Dany.. I live in Crown Point Indiana.. how abt you?

Hi Linda,

I'm in sunny San Diego!  We lived in Indianapolis prior to moving here in 2001.

As far as exercise goes...you don't have to start big like going to the gym, especially if you were never into it before.  Start easy and go for walks.  You wouldn't believe what getting out and walking can do for you!  Cleaning the house is great exercise...and you get stuff done (I know, cleaning the house sucks!) but it's something to consider!

Once you get down to 10mg of pred, it all starts getting better.  But if you are having trouble sleeping, you may want to deal with that before getting on antidepressants 'cuz it could be fatigue that's the trouble spot.  There is no shame in going on antidepressants.  You have a lot to deal with!  I was pretty close to requesting them but didn't.  If I ever flare...I may!

Take care!

Hi Linda,

It's, sadly, totally normal.  I was like that when I was on the higher doses of pred.  My poor daughter!  She was 8 when I was diagnosed.  Being a single mom, working fulltime and dealing with that emotionality was hard.  I would snap and then apologize to her and explain it was the medication.  I told her that it was 100% not her but that everything was overwhelming and I had trouble dealing with it.  That's why I said that if I have a flare, I may request antidepressants right away.  The days after the nights I took Xanax, I was way calmer and able to deal with things.  Xanax is an anxiolytic but really made a difference...but not if I took it nightly...after taking it 3 nights in a row once, I snapped and sat in my boss's office for quite some time just crying...for no real reason!  Apparently, it can cause some emotionality as well!

Give yourself a break...especially when you feel it boil up!

Congrats on being able to deal with a teenager!!