Autoimmune Hepatitis & other autoimmune diseases

[Jody515]

Hi,
Just wondering if any out there that are suffering from autoimmune hepatitis have other family members that have autoimmune diseases?  I have 2 brothers who both have autoimmune diseases plus a cousin who just passed from one.  In addition, my cousin who passed, her mother passed from Lupus in her forties. I have also been thru tx for HCV and am okay now for about yr and half.
Jody

[Sarad]

There is another forum autoimmune hepatits with a few of us allway writing and supporting each other. Find it and we would love to hear from you.
Sarad

[iloveigs]

Hi Jody

I have a paternal first cousin that has RA

The other forum Sarad's referring to is under Autoimmune Disorders....there's a post that she started that we've been talking on for a while...come join us!

Erin

[9743km]

Hi Jody,
I'm the 3rd member of the group on the other website that Sarad referred too... Welcome!!!

[skini]

Hello, my mother 63 y/o, went to the Dr. last year (july 07) for a severe headaches and in the blood test she come with the enzimes severe high, the doctor inmediately told her to stop any medication she is taking and change diet, she has never been a drinker, very healthy foods only. She also have high pressure, (doctors say emotional high pressure do to stress), and back in december she has UTI, so she need to be treated, also she start to suffer arthritis, the doctors think the enzimes went to high do to so many pilds for the arthritis, so they stop all the pilds. But for the UTI she has to have an antibiotic, bactrim, didn't work so they put her in cipro, didn't work neither, so they give her a vaginal cream, seems that work, but know is not only her hands hurt for the arthritis, also her legs and back, she start to have fever, up to 102 and swelling in the hands, she went to the hospital, they have her under observation for 2 days and sent her back home and told her not to eat any medicine, but she is in a lot of pain, should we take her to a different hospital? or that shoul be the diagnostic and should be in a lot of pain?
Please some one help me to help my mother.
Thanks..

[Jody515]

Hi Skini,
Sorry, but I don't understand.  Are you saying she was diagnosed with Autoimmune Hepatitis?   I believe in order to be properly diagnosed, she would need a biopsy.  Have her enzyemes been high or what??? Before my diagnosis, I did have upper body arthritis to the point I couldn't dress my upper body.  Are there others in your family with any autoimmune diseases??  
Jo

[Kande]

Hello Everyone, I just stopped by your community to make sure everyone knows about the new Transplant Forum. I didn't know if anyone would be interested in the forum or not. But I do want to invite all of you. If anyone has had a transplant, would you consider sharing your story. I feel the new site will be of great benefit to a lot of people and since we are kind of sister sites I thought we could help one another. Thank you!  Kande

[iloveigs]

Hi Jody

In response to your question over in the other forum about getting off prednisone. I've been on it since Nov 07 and my body has responded such that my LFT's went immediately back to normal after starting the prednisone. My GI began tapering the dosage as soon as we saw that my enzyme levels had dropped. I was told from the very beginning that they would get me off the prednisone as soon as possible and switch to another immunosuppressant, which I'm on now too (Imuran).

My question for you would be, how are your LFT's? Are they still really high, or stable in the normal range? Since everyone is different, it may take longer for certain people to get off the prednisone. I would definitely talk to your doctor about it b/c you don't want to stay on it for a long time.

[Jody515]

Hi iloveigs,
Thanks for the info.  All my blood work has always came bk fine.  I see a hepatologist annually but he has never suggested that I would ever go off the prednisone.  I also take the Imuran & have since the beginning.  Perhaps it is due to I did have HCV & they are afraid of a relapse of one of the diseases.  I don't know but I will ask on my next visit which is in May.  I do appreciate you letting me know this, I am making a list of questions to ask about this on my next visit.  Jody

[gentleliver]

I'm shocked they haven't said anything about getting you off the prednisone. My doctor was all but apologizing about putting me on it in the first place and seems cognizant of the fact that I need to be off of it, or at a lowered dose, asap.

[iloveigs]

Just got back from my GI appt.

AST: 42
ALT: 32

I get to drop to 5mg Pred today and I'll recheck LFT's in 2 wks. He said at that point, if all is normal, I'll drop to 2.5mg for 10 days and recheck one more time.....then I'll be off it finally!

Jody, my GI mentioned today that some people have to stay on a low 'maintanence' dose of prednisone, like 2.5mg, but he didn't say if that was a permanent thing. He told me today that I'll always have to take Imuran for it (as long as my body reacts correctly).

Erin

[Jody515]

iloveig & gentleliver,
I remember last yr when I was there complaining to his asst about something but can't remember what.  She said if necessary she would talk to him about trying to get me down to 2.5 mgs of prednisone but we discovered something else was the problem.  The only thing I do know is that the AIH was active for about 5 yrs before it was discovered & that damage had been done, not sure how much, another question to ask when I go bk, & maybe that is the reason being damage, just don't know.  They have never said anything to me about removing the prednisone though.  Guess I need to find out why. Anbody else out there still on prednisone for long periord of time?  jo

[Jody515]

So to all out there who are off of prednisone & have been off, how long & how are you doing?  I need to know these things prior to go to see doctor.  I know prednisone isn't good for you & the consequences one could have from it.  I guess I have just had so many other things on my mind to worry about I really haven't given this much thought.
Thanks for any imput please.  Jo

[9743km]

iloveigs...First let me say, I am so happy for you.  What did your GI say about your rib pain?  Congrats on the prednisone....

Jody515...I have been on prednisone since March,07.  My Dr. told me the max he would want me on the prednisone is a year.  Well, it turns out my disease is a lot more aggressive then he hoped, but he told me the other day his goal is to get me to at least a "maintenance dose" anywhere from 1 mg to 5 mg.  It depends on the person.  I would say you need to definitely discuss w/your Dr.  I am currently down to 10 mg, they are going to check me in 2 weeks.  If all goes well the next drop is 7.5 and he said it just becomes a body game at that point.  They have to see what your body will allow.  His hope though is to just be on the immunosuppressent.  Definitely talk to your Dr.  
By the way, my Dr. told me my disease was probably active for about 2-3 years before we discovered it as well.  May be why my disease is so aggessive, much like yours.  I did have some liver damage as well, but he won't discuss how much.  He tells me to focus on the recovery, and he will deal w/the rest..
Good Luck talking to your Dr....

[Sarad]

Erin: Great news about the prednisone way to go. How are your ribs doing you must let us know exactly what it is.
Kim: If I remember correctly you mentioned that you went down on the prednisone. Way to go. You must be so happy.
Well I have been feeling better lately less nausea.
Jody: You have been on prednisone for a long time. I started May 1, 2007 and from the begining my liver Dr. said that the goal is to get me of prednisone with a year or less. I am now off of it 9 month later.I am also on imuran from the begining 75 mg and hopefully I will go down to 50 mg by the end of March. Then I will probably stay on it for a long time.
You will really have to check this with your Dr. I know that being on prednisone for so long is not very good but I am not a Dr. Wish you lots of luck and keep us posted.
Take care ladies and be strong.   Sara