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Jen Newly Diagnosed with AIH, needs advice

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Posted 3/3/2014 3:00 PM (GMT 0)
JenJen posted this on a very old thread...here it is:

Has been a while since I've been on here. Diagnosed with AIH in Nov. 13.levels in 3000s start pred 40mg /Cellcept. Responded very well. Last labs 2 weeks ago revealed AST in normal range at 36. ALT still slightly elevated at 56. So, hepatologist cut pred down to 10 mg. Im due to take labs tomorrow and feel quite sure that my enzymes have gone back up (diarrhea, aching liver, get nauseous with any fatty food).
What does this mean? Is this part of the process and will that mean he will put me back on high dose? Gaaaad, hope not. Gained 23 lbs in 2months - look like a toad with acne.
So, if he does increase the dose, will he try and come back down again?
PS he did not cut me from 40 to 10. It was a gradual cut every couple of weeks based on improving labs.
Thank you!
Jen

________________________

I've reposted this for Jen Jen, hoping more of you will pop in. Sending note to my co-moderator Dany who has AIH herself.

ML
Posted 3/3/2014 3:04 PM (GMT 0)
Jen,

Glad you have found us...we likely welcomed you in December when you first joined, but we hope you will come often and let us know how you are doing.

Hugs,
ML
Posted 3/3/2014 3:18 PM (GMT 0)
Hi Jen,

Sorry to hear you aren't feeling well. Are you on an immunosuppressant as well as the pred? The immunosuppressants are 'steroid-sparing' meds so they help wean you off and are safer to be on long term. If you aren't, please talk to your hepatologist about it. Are you seeing a hepatologist? He may only put you back up to 20 if they've gone up a bit. Hopefully they haven't :)
If greasy foods are bugging you, you should also ask to have your gallbladder checked.
Posted 3/3/2014 3:20 PM (GMT 0)
And I feel your pain...I gained 45lbs while I was on pred shocked
Posted 3/3/2014 10:59 PM (GMT 0)
Jen...I was just diagnosed last summer with AIH. I started at 40 mg of Prednisilone in mid August and then Imuran was added Oct 1st. My enzymes dropped quickly and steadily (I started around 3000 too) up until about the 20th of Sept....they plateaued one week the went up slightly the next. At that time I had already tapered down to 20 mg. That's the only time the doctors increased my pred (back up to 24 mg from 20 mg), and also added the Imuran. After that my numbers started dropping again and both were within normal range by mid December. So, you may have to go up slightly again on the pred for a little while. When did you start the cellcept? at the same time as the Pred? I'm not sure if it's the same as Imuran in that it takes up to 6 weeks to fully take effect but if it is, perhaps it's still building up in your system and not able to fully control things yet without the help of the pred.

I totally understand how you feel...I had such a hard time on pred, was in tears when they told me I had to go back up in dose.
Posted 3/3/2014 11:39 PM (GMT 0)
Hi Jen, I am sorry to hear of your diagnosis. I was treated with pred and imuran. The key, I think, for me was the extremely long time that it took to decrease the prednisone.

I was on both drugs for three years. My hepatologist was extremely conservative when lowering the dose of prednisone, for fear that I would relapse. I never did, and in fact, I was able to discontinue both drugs - despite the fact that my liver was already very cirrhotic.

I used to beg him to quicken the taper, and he always refused. It made me frustrated, but I was extremely compliant and followed his instructions without fail.

The pred made me gain weight and it is hard to know what part of my life caused me to have emotional issues. At the time, I was in a difficult marriage, I had a four month old baby, and I was working and I was on prednisone. Plus I was depressed and anxious to begin with. I went on an SSRI and that helped, but the stress of that whole time in my life was insane.

Well, I digress. My only non-scientific piece of advice is to taper down the pred in tiny dribs and drabs over months or years. I have no proof, but it is my belief that the long time on the pred finally got my immune system to quit destroying my hepatocytes.

Susan
Posted 3/3/2014 11:45 PM (GMT 0)
Oops, I missed that you wrote you were on CellCept.  How much and when did you start?  CellCept has a more rapid onset than Imuran (azathioprine).  So it should already be working.  I agree with Susan on the slow steroid wean.  It will also help curb joint pain that can occur from decreasing pred too quickly.

It's also best not to decrease pred until your numbers are normal.

Posted 3/6/2014 1:18 AM (GMT 0)
My AIH also is treated with Prednisone and Imuran when I flare - when I was diagnosed in 2007 I made changes to my eating habits and still avoid fatty and fried foods even when I'm in remission
Posted 3/16/2014 8:28 PM (GMT 0)
I can relate....I was diagnosed with AIH last year and am in the "10 mg trap" right now. I have been trying to get below 10 mg prednisone for MONTHS! I can tolerate 9 mg pretty well but everytime I try 8 I start feeling worse and my AST/ALT go up. My rheumatologist keeps me on a tight rein. I have read that it's really hard to get your adrenal cortex working at speed when you're at that level because the prednisone has been substituting. Reading some of the replies to you have helped me--I never dreamed this might take three years. I understand being in tears about having to increase a pred dosage :) I cried and begged to go from 30 mg to 20 mg two weeks before I was supposed to.

Post Edited (Smokin'hot granny) : 3/16/2014 2:32:58 PM (GMT-6)

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