4 weeks dx AIH

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shoottherooster
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 10/4/2009 9:14 PM (GMT -7)   
cry  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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/4/2009 9:34 PM (GMT -7)   

H, Vicki, and welcome!  While people with liver disease tend to have their days and nights mixed up, I believe your inability to sleep more than 3 hours is due to the Prednisone.  I know someone who had to go on it and he paced and paced--and lost 30 lbs. from pacing.  Since Prednisone is a steroid, it can also play havoc with your emotions.  What you are experiencing is probably from both the med and lack of sleep.

We have quite a few people here now with AIH, so you definitely are not alone.  I certainly can see no reason you shouldn't bike, if you feel up to it.  As you said, it might release some tension.  Just don't race or overdo it!

It's getting late on the east coast, but I'm sure before long you will get some responses to your post.

Again, welcome!  :-)

Connie


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


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 10/5/2009 5:12 AM (GMT 0)   
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********************************

shoottherooster
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 10/4/2009 10:47 PM (GMT -7)   
Thank you all for the replies, to June i must tell you why the user name (shoottherooster) it's a joke between my mom and i, when she ask me how i have been feeling, and am i getting any sleep, when i say yes i have slept but i had to shoot the rooster (meaning i took Lunesta or some sleep aid) otherwise i spend the nite eyes wide open looking at the imaginary rooster on the footboard just staring at me waiting for time to crow! :)) Just something funny to try and keep things light. I think i will try the bike out and not overdo it. The hardest thing for me is being patient, and remembering how good and healthy and strong i use to feel, comparing to what most days are like now. I have plenty of small home projects to be involved in and i love to read, but my concentration level is nowhere to be found. Then the frustration sets in. Then the depression sets in. Please don't take me wrong, I am so thankful, i know i could be facing something far more serious. I guess I'm fighting the fact, i don't know. I certainly appreciate knowing there are people out there who shares this, otherwise I know no other personally with AIH, this is a very helpful place. Thanks again. Vicki

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 10/5/2009 7:54 AM (GMT -7)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/5/2009 1:12 PM (GMT -7)   

"we paid for window. And said bad dog ,bad dog next time get the dang rooster."

June, that's the best laugh I've had in awhile!  Hilarious!  LOL!  smilewinkgrin

Shoottherooster/Vickie, that's about the most inventive screen name I've ever seen.  Glad to have you as part of this forum.

Jerry, tree decorated before Halloween?  You really must have been restless!

I tried Trazedone.  It put me to sleep so well that I peed the bed 2 nights in a row.  That was enough for me.  The melatonin is working well, but I have to combine it with 10 mg of Flexeryl.  I also had strange dreams (bordering on nightmares) after a couple of weeks at 3 mg, so I cut it in half and no longer have them.  The problem is that I forget to take the sleep meds an hour before I want to go to sleep.  At 3 in the morning I'll remember--then sleep for 11 or 12 hours and get nothing done during the day.  shakehead

Hugs all around,

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 10/5/2009 1:33 PM (GMT -7)   
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 shocked
 
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!!
 
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


shoottherooster
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 10/5/2009 7:53 PM (GMT -7)   
Thanks so for the replies, i have an appointment tomorrow with hept. to discuss blood work done today, i have not been perscribed an immunosuppressant yet, just pred. i'm know it isn't wise to drop dosage and i would not recommend that to anyone, i had never experienced the emotions (crying uncontrollably for hours) and jerking and shaking, on top of racing heartbeat and insomnia. I truely thought i was loosing my mind. I did get a p-script for trazodone today. Bone density says - ostiopenia (not sure of spelling, sorry). Is it better to get a perscription for the correct cal. vit D or just the Caltrate with D.
You all are so brave experiencing this and i so appreciate your honesty and am so thankful for this forum, it gives me sanity!
I dusted off the mountain bike today, then sit down beside it....maybe tomorrow..lol
Jerry1, Connie and Dany, thank you so much. Vicki

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/5/2009 9:06 PM (GMT -7)   

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


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


shoottherooster
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 10/6/2009 8:40 PM (GMT -7)   
Liver levels on the rise again, yes my Hepatogist said due to my lowering the pred. Had to have more labs to see if Imuran is an okay thing for me as to whether it would prove a toxic backup or not. This of course is not an in house lab, gets sent to (Quest) 3-7 days out, i got the paper perscription in case labs are good to go. I still have this UT infection (couple of months now) Cipro didn't wipe it out.

I have this part-time job interview with our local library Friday, my Dr. says she isn't sure it is a good idea, she's not sure how i would react to the flu if i were to catch it. Now that is a bummer! I am more confused than ever.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/7/2009 5:04 PM (GMT -7)   

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


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


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/9/2009 3:57 AM (GMT -7)   
The pred is keeping you awake not the liver.
I have AIH and I tend to sleep all the time because of the inflammation of the liver.
But the pred will keep you awake 24/7 you will need something to help you sleep og take the pred in the morning.

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 ~

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