4 weeks dx AIH

 I am a 47 year old female, always been very strong and had lots of energy, until a couple of months ago (looking back more like a couple of yrs trying to find out if something was wrong) i was finally dx with AIH. At this point it had me down in bed, barely able to move from one room to the other. Completely wore out, sweating and chilling and aching under my right rib. Then i noticed the very dark urine and yellowing of my eyes. This called for a Friday nite emergency room visit. The dr. dx hepatitis that night, sent me to a hepatologist within two days, liver biopsy determined AIH. Almost four weeks on prednisone starting 40 mg for a wk, then down to 20mg after my levels came down considerably. While on the 20 mg. i have already shown swelling in the jowls and neck, no where else yet. The worst part of it has been only getting approx. 2-3 hours sleep each night (morning), the hours from 5:00am to 8:00am... what is with that???  Due to lack of ability to sleep, i think i have almost gone emotionally insane!! Just ask my husband! I have become a human rollercoaster of emotions! I dropped the pred. down to 10 mg. until i can reach my dr. tomorrow, and noticed a big difference, my heart rate is not racing at least, and i slept for 9 hours last night, i don't think that is going to happen again tonight though, it's eleven oclock p.m. and i'm not yawning yet. I have a couple of good days each week, thats about it, most days are draining, i wonder if exercise like bike riding would be okay, i'm looking for something i can do to release some frustration and not sure what i should or should not do. Any advice out there, i am just happy to have found this forum to read and know i am not alone, it sure feels lonely some of the time. Thanks, vicki

Hi vicki
When we lived at our other house our neighbor had 1 rooster made a nest up in a tree, and he would crow every time at night that the lights from a passing car would go by. We would have loved to shoottherooster. We had a chow husky mix dog that must have been as upset as we were . She broke loose from her runner. Went to the neighbors house and chased that rooster till she cornered it in their living room. Went right through there biggest window. Neighbor took her home we paid for window. And said bad dog ,bad dog next time get the dang rooster.

Ride on, I would ride a bike if I could. I'm supposed to walk but have foot problems, so I only do it when I feel ok. Then I have to tell my husband which streets I will be walking through just in case I fall or something.
I'm sorry for going on and on with out welcoming you I'm june. I don't have AIH, I have Cryptogenic liver disease which went undiagnose for many years So I am now ESLD. I get some of the symptoms, like not sleeping unless I take something to put me to sleep. But they really don't want me to take them because they build up and my ammonia level rises and my short term memmory loss is a noodle. connie suggested melatonin which is in our body anyway, you can buy it anywhere they sell vitimines. The only problem I had was very strange dreams, but I did sleep. Don"t take pred. so can't help there. Today I was terribly tired and had a million things to do. So I CRIED no one else want's to talk about it. You will find there are many people willing to help. So don't be a strainger.
********************************june********************************

Shoottheroster,

I also have AIH was diagosed in 06 and have been on Prednisone for most of the time.  I also had trouble sleeping and last year I had my Christmas Tree up and decorated before Holloween because I could not sleep.  I tried the different sleep aids but nothing worked I would sleep for 2 hours then up the rest of the night.  My doctor finally tried me on Trazdone it is a anti depressent but the doctor felt it would be safe for my liver and calm me enough to fall asleep, well it worked ,I still wake up a couple of times but fall back to sleep, it saved my life.  I was also driving my husband nuts because I could not sit down for 5 minutes.  I never suffered from depression but it calms me down and stops my mind from racing and lets me fall asleep and I have no drug hangover the next day.  You might want to ask your doctor if it is safe for you to try. 

I also excercise everyday either tennis, biking or the gym if you have the engergy go for it.  I am currently on 15mg of Prednisone and 50mg of 6MP which has been helping so far in weaning down on the Prednisone. 

Jerry1

Vicki,

I was diagnosed with AIH Jan 07.  If you search for AIH on this forum, you'll find previous posts as to what everyone has gone thru with their meds and how they were diagnosed, etc.  Please don't play with your pred dosage unless directed by your hepatologist...I don't care how bad you look (swelling, moon face) or feel (emotional rollercoaster, insomnia)...it's a dangerous game to drop your dosage without having blood tests to make sure you are at stable levels.  The last thing you want is to have to go back up to 40mg.  You do need to be patient with the course of treatment and eventually they will wean you off the pred or get you ont he lowest dose possible.  Are you on an immunosuppressant too?  They usually prescribe imuran (azathioprine) or another one as they are considered to be "steroid-sparing" drugs.  Yes, they have their own side-effects (usually after a month or so, they go away) and they have long term risks but those are better than the long term pred risks.  I couldn't take Lunesta or Ambien as they made me funky in the morning but Xanax taken every 2 or 3 days worked well.  It's addictive so you have to be careful with it.  I didn't take it eevry night and just stayed awake as I found if I took it every night, then I got REALLY emotional on the 4th day...way more than on the pred alone

Please speak to your doc about your pred dose now and if you aren't on an immunosuppressant, they should address that.  They can also give you lasix for the water retention...my knees used to swell up to double their size by the time I got home from work when I was on the higher levels of pred.

Walking, cycling, light weights are all good forms of exercise and they help strengthen your bones (something at risk for thinning with the pred).  You should be on a calcium with Vit. D supplement and you should have a baseline bone density test.

Take it easy and keep us posted on how you are feeling...I just finished my 4th Breast Cancer 3-Day (that's 60 miles of walking over 3 days)...so exercise is certainly not frowned upon!!

 

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Dany

 

_{Diagnosed with AIH January 2007,}

_{CMV (cytomegalovirus) June 2008}

_{meds: Azathioprine 100mg}

 

 

Vicki, osteopenia means a loss of bone density.  Ask your doctor about specific calcium + D recommendations.  As Dani mentioned, exercise strengthens bones, too, so I hope you are able to get on the bike soon.  You might also try some small 3-lb. weights.

Hugs,

Connie

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hep93
Forum moderator - Hepatitis

"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Vicki, ask about Macrodantin for your UTI.  I used to get them a lot and that is what worked for me.  If that doesn't wipe it out, you should probably see a urologist.

I suppose your doctor has a point about the flu.  Libraries are busy places with exposure to many people.  Plus their hands have handled books, counters, etc.  Probably a haven for germs.

Sometimes it seems like we can't win for losing, doesn't it?

Hang in there!

Hugs,

Connie

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hep93
Forum moderator - Hepatitis

"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland