Hi..my first time AIH and cirrosis of Liver

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Linda929
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/31/2009 8:48 PM (GMT -7)   
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?

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 8/1/2009 3:18 AM (GMT -7)   
Hi

I also have AIH and UC I was on pred for six months last year and now I have to start again.

I gained 44 lbs in 3-4 months now i am starting to loose the weight but I got the most ugly moon face in history and my back turned hairy.
Now I have to go back on pred because of the AIH and I am not looking forward to it.
I also get the worst heartburn and over all this drug sucks BUT it makes your Disease go away for some time so It is a win, loose thing.

And you say that your family thinks you are too young to be sick I am only 24 yrs old.

The side affects of the pred to go away you loose the hair and the water but it takes some time. So be patient.


Good luck.
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
Crohn's disease in December 2008 Then they changed it to UC in June 2009.
and Autoimmune Hepeatitis in July 2009


Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 8/1/2009 8:05 AM (GMT -7)   
 
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/1/2009 10:18 AM (GMT -7)   

Linda, I just want to welcome you to the forum.  As you can see, we have a few members with AIH.  I have hep C and cirrhosis.  I am about to have my 8th major surgery in 6 1/2 yrs. and feel that all the surgeries and illness have definitely aged me.  I do what I can to take care of my skin, watch my weight, etc.  I know that on the prednisone, people gain weight and get a moon face.  Hopefully, you will get your disease under control and be able to decrease the amount of pred. that you are taking.

Best of luck to you!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Linda929
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 8/1/2009 7:50 PM (GMT -7)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/1/2009 9:14 PM (GMT -7)   

Yes, it is a steroid.  As far as I know, the side effects you mentioned will go away once the drug is discontinued or weaned to a small dose. 

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 8/2/2009 9:55 PM (GMT -7)   
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,
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


Linda929
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 8/4/2009 3:24 AM (GMT -7)   
Yes.. I think the weight gain is extremely hard for me. Along with the facial hair. I feel so ugly these days. I had finally got to my goal weight and then BOOM! Here we go. Every week another +5 lbs. The mood swings aren't any fun either. I feel like I am bipolar. There are days that I forget I have this stupid disease, and I go along with life. Then I do something, or can't do something I used to do and then I remember. I guess I'll just take it day by day. What else can I do? I can't help wondering though, if my liver is a majority cirrhotic, then what is next?

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 8/4/2009 7:18 AM (GMT -7)   

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
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 8/5/2009 8:11 PM (GMT -7)   
Linda, Welcome to HealingWell. I am so sorry you have been faced with liver disease. Dany has given you some great advice. Following your doctors orders are the most important thing you can do. Also, educate yourself as much as possible concerning your disease process and your medications. Don't hesitate to ask your doctor questions. A suggestion I have is to make a list of the questions you have then when you see the Dr you will be focused and able to digest his answers. Post any time you like. You will find that the members on this forum are educated and compassionate and will help you anytime they can. 
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Linda929
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 8/7/2009 8:22 PM (GMT -7)   
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?

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/8/2009 9:39 AM (GMT -7)   
Hello Linda and welcome to HealingWell. Liver disease no matter what caused it is very hard to deal with. You have the right attitude......Get passed all the "what if's and if onlys" and deal with today going forward. It's going to be a hard journey so don't waste any energy on things you can not change. We are in your corner. Hang tough and do what you need to do.

We are here to support you in anyway we can..........

Take care..........thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 8/9/2009 9:45 PM (GMT -7)   

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!


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


Linda929
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 8/10/2009 8:40 PM (GMT -7)   
Thanks all for the great advice.  It's wonderful to see such positivity!  I am really trying to be positive.  This weekend was a melt down for me.  My son turned 18 and I gave him a party, but anytime something went wrong, I had a breakdown.  This is not like me.  I am organized and that day I coudn't find things and I bit everyone's head off.  I can feel the "stress" starting and feel powerless to stop it.  I get so mean.  When it's over, I am so sorry.  Is this "normal?"  It can't be.  Am I just crazy?  Is it the prednisone, is it the liver not working right?

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 8/10/2009 9:47 PM (GMT -7)   

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!!


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 

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