Rising Enzymes-8 months post tx

My liver enzymes have risen steadily the last three weeks. Alk phos was in 80's NOW 166, AST was in 40's now 190, and ALT which was in mid 50's now up to 234.

In process of scheduling a biopsy early next week to see what exactly is going on. Tx coordinator did not mention rejection, but rather the possibility that it is autoimmune hepatitis.

Has anyone heard of this post tx?

Side note: I originally was told I had autoimmune hep when diagnosed in 1990. However all my blood tests came up negative for it. My biopsies on my original liver showed giant cell hepatitis of unknown cause. So I was listed as a Cryptogenic case.

Not happy at all....just when I thought I was getting better! another setback.

Hi Susie

I did a quick scout round the internet.

It is true AIH can recur after transplant but I also found cases of people developing for the first time after a transplant for something else (google 'de novo autoimmune hepatitis after transplant' if you want to find the details).

Good they are acting so fast. If it is AIH whether a recurrence or new they should be able to control it by tweaking your immunosuppressant meds I would have thought. Dany may know more.

If it is AIH and they suggest long term steroids then do ask about budesonide rather than pref. Side effects tend to be much better.

Have they tested for autoantibodies? Or maybe the tests aren't so accurate post transplant.

Keep us posted.

Ann

thanks Ann for the google suggestion!

Hi Susie,

Sorry to hear. I agree with everything Ann said. I would say the stress of transplant would be a big enough trigger if you were predisposed in anyway for AIH. I am surprised it would rear up and flare being on post transplant meds since they are pretty much what they would treat you for with AIH. If you've already stopped the steroids though, maybe that's why? I also agree that if they diagnose you with AIH to ask about starting Budesonide (Entocort). What meds are you currently on?

5mg pred is still less than the body naturally produces so you can still have an AIH 'flare'. I know you don't want to have to deal with AIH too but there are worse diseases out there :(
My hep had said once that we could always try tac for immunosuppression so you may not have to change drugs but maybe adjust dose.

To follow up Dany's point I know a couple of people who are on tac for AIH so I too would think that they would probably be able to control the AIH with tac plus an increased steroid of some sort IF that is what it is.

Good luck with the biopsy - hope you get some answers.

Ann

Sorry Susie...That stinks! Please let us know what the ID doc has to say. Keeping you in my thoughts..Big hugs

Saw the Infectious Disease doc. My CMV level was 3000, positive but not super high. He is more concerned that it appears to beattacking my liver. called it CMV hepatitis. Not 100 percent sure yet if I have it, biopsy results are not back yet. he doubled my Valcyte to 1800mg per day. Walgreens called to make sure I wanted it as my copay thru part d is $3000. Like I have any choice? my husband still works so I don't qualify for any help. Luckily, my parents are there for me so I can get this med.

Oh Susie! I am sorry to hear this. What is "tombs"?
It sounds like your doctors are being very aggressive treating this. Is this all happening from the CMV?
Hugs!

Sound like it could have been worse...glad it is working out okay. I did some reading today also...and you are not the lone ranger with that CMV post TP! I guess it happens. Hoping the Valcyte gets on top of it!

Hugs,
ML

My docs had me taking valcyte for 6 months, post transplant.

Suzie...glad for the update and more positive news! Hugs, Carol

Susie, This is good news! Not to cost of that drug, but the fact that it works. And I do love good news. Big Hugs