Autoimmune Hepatitis; newly diagnosed and can't tolerate any form of prednisone

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Julie A Roberts
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/15/2009 10:56 PM (GMT -7)   
Just diagnosed. (steroid induced psychosis) and cannot tolerate any form of prednisone. Liver enzymes are higher than ever; ALT, AST both above 100, ASMA 36; AMA; ANA elevated don't have numbers. Very symptomtic but liver biopsy shows swollen, fatty liver, PAS staining but no fibrosis, cirrossis...
 
What are medication options in this scenario...Note all of my other diseases and medications. I'm getting tired of disease naming ceremonies....
Other diseases: progressive relapsing multiple sclerosis, fibromyalgia, behcets disease (inflammtory disease of blood vessels and veins), Alpha 1 antitrypsin (genetic disease affecting lungs and liver), hypothyroid, hashimotos, severe anxiety; PTSD;antiphospholipid disease, factor V Leiden elevtion factor Viii  elevtion, (i.e. on anticoagulants); migrines. partial focal seizure; tenazapam; osteopenia, degenerative disc disease, herniated L3,4,5; chronic pain,reflux, anxiety, auto immune hepatitis;anemia,  gallbladder disease (gallbladder being removed next 3 weeks); persistent elevated liver enzymes....I could go on but I'll stop here....
 
Meds: Aralast infusion weekly, copaxone, Dessicated thyroid, oxycodone, ativan, oxygen 12 hrs per day, dicylomine, rantidine, colchichine, lovenox
 
Vitamins and natural treatments; Dairy, gluten, sugar, egg, free; Chemical free cleaning products in home; all organic, Mega-Multi-Vitamin powder, vitamin D3, omega 3, milk thistle, chromium, slow FE Iron, potassium, magnesium, magnesium gel and flakes for bath, meditation, stretching, having faith, spirituality; uva ursi at times


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/16/2009 8:44 AM (GMT -7)   
Hello and welcome to the group!  I'm sorry to hear of your list of diseases...that must be quite challenging.
 
I wonder if Entocort would work.  It's a glucocorticoid steroid unlike pred which is a straight up corticosteroid.  Entocort works like pred but maybe that would help you avoid the psychosis effects?  I don't know, just something to bring up with hepatologist...I hope you see a hepatologist and not just a GI.  You have too much going on to not see the right specialist.
 
So they are sure it's AIH and not just fatty liver disease?  ALT/AST around 100 isn't that high.  There are some folks on the Yahoo group that have been over 5000.  Mine were 750/850 when I first fell ill.  Your ANA are positive as you have other AI diseases...I guess the ASMA would be the defining test for AIH.
 
When do you see the doc next and how often are your blood tests?
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


Julie A Roberts
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/16/2009 10:44 AM (GMT -7)   
I see the doctor on the 8th of October. They rerun the regular Hepatic panel about every month for the past few years. The highest any of the numbers has been is 200 but they change back and forth. He said typical AIH patients don't hve levels that go up and down.
 
The AMSA done 3 weeks ago was 36. Drawn Friday, was 25,  faint positive and some of my liver enymes were down to 95 nd 55 respectively. Yesterday the blood work was rerun while in the ER (after Hida scan) and the liver enzymes were back above 150. I have never had an AMSA before this month.
 
The AMA which has never been run before should be back Wed. same with the ANA which hasn't been run in a year or so.
 
The doc thought the first AMSA could be  false positive somehow so reran all the tests. I also have a poorly functioning gallbladder based on HIDA scan yesterday and they are referring me today to a surgeon to have it removed. The doctor feels this may bring my regulr hepatic panel down since gallbladder problems can keep liver enzymes up.
 
i think he is still on the fence re whether this is AIH. The liver biopsy mostly focused on enlarged, full of water, fatty tissue.
Other diseases: progressive relapsing multiple sclerosis, fibromyalgia, behcets disease (inflammtory disease of blood vessels and veins), Alpha 1 antitrypsin (genetic disease affecting lungs and liver), hypothyroid, hashimotos, severe anxiety; PTSD;antiphospholipid disease, factor V Leiden elevtion factor Viii  elevtion, (i.e. on anticoagulants); migrines. partial focal seizure; tenazapam; osteopenia, degenerative disc disease, herniated L3,4,5; chronic pain,reflux, anxiety, auto immune hepatitis;anemia,  gallbladder disease (gallbladder being removed next 3 weeks); persistent elevated liver enzymes....I could go on but I'll stop here....
 
Meds: Aralast infusion weekly, copaxone, Dessicated thyroid, oxycodone, ativan, oxygen 12 hrs per day, dicylomine, rantidine, colchichine, lovenox
 
Vitamins and natural treatments; Dairy, gluten, sugar, egg, free; Chemical free cleaning products in home; all organic, Mega-Multi-Vitamin powder, vitamin D3, omega 3, milk thistle, chromium, slow FE Iron, potassium, magnesium, magnesium gel and flakes for bath, meditation, stretching, having faith, spirituality; uva ursi at times


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2009 10:58 AM (GMT -7)   

Hi, Julie!  I just wanted to welcome you to the forum.  I see you've already gotten a response, so that is good.  We do have a few people here with AIH.  We don't generally bother noting other diseases/disorders we are dealing with, except as they relate to liver disease.  I get the feeling on other forums that it's a game of one-upmanship (I have more diseases/meds than you do.)  This doesn't mean you don't have a lot to deal with...you certainly do...but it may be more helpful to just focus on your liver here and any other conditions that may affect it.

I can relate to Prednisone psychosis, though!  I had 2 caps of Prednisone about 30 yrs. ago and had a psychotic episode (hallucinations, unable to sleep, felt like bugs under my skin biting me) for 3 days until I finally went to the ER.  I was told to always say I am "allergic" to Pred.  In the event that AIH is a definitive diagnosis for you, I hope you will check out Dany's suggestion and maybe others will also have some ideas for you.

Best of luck!



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

Post Edited (hep93) : 9/17/2009 3:27:00 PM (GMT-6)


Julie A Roberts
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/17/2009 1:57 PM (GMT -7)   
Thank you for your comments. I was using the signature feature and as I was new wanted to go ahead and give you it all in answering my question. The signature capability doesn't seem to let us have one signature for one disease and another signature for another. it's funny. I understand your one-up thought of who has more diseases or takes more meds (smile) but I have always appreciated finding other people who have both one disease that I do as well as another...and it often helps when trying to figure out decisions of treatment etc.
 
Well as of this evening, the AMA and ANA are not back and i see the GI doc again on Wed and i know he wants me to see a liver doc; probably the alpha 1 liver expert at UNC-CH in coming months. But if he does want to start treating AIH, the issue of prednisone is going to be a big problem...so we'll have to look into the suggestion proposed in this thread.
 
Thanks again.
 
Julie
Alpha 1 affecting lungs and liver, persistent elevated liver enzymes, antibodies for Hepatitis A but never knew I had Hepatitis A in the past, being worked up for AIH and got repeat AMSA and waiting for AMA and ANA and then will me with GI on Wed. Also have upcoming appt with surgeon to remove gallbladder which may be a partial cause for the persistent liver enzymes.

westex
New Member


Date Joined Sep 2009
Total Posts : 17
   Posted 9/17/2009 2:40 PM (GMT -7)   
My sis (52) was diagnosed with 90% cirrhosis liver gone , active hepatitis C and bleeding avarices , 4 weeks ago. She / us did not even know she had cirrhosis. And the dr.s are not givin her any medication except blood press pills , but they wont' tell us an estimated time of death, which I know that no dr. will, but we are all new to this and don't really know what to expect. The said end state liver diesese ????????? right now she seems fine except her back hurts, so any help on this topic would be appreciated.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/17/2009 2:55 PM (GMT -7)   

 

 



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

Post Edited (hep93) : 9/17/2009 4:00:58 PM (GMT-6)

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