AIH getting of immunosuppessing meds?

Hey

Been here before but it was so long ago I
forgott my login and so on.
Well here I am again.
Have got AIH that started after I was given Remicade.
Initially treated with preds at high doses and put on Aza/imurel but got a pancreassideffect of that. So I got chloroquine insted its an old med for malaria that used to be a med for reumatic diseases before.
I am lucky as my AIH responded fine to it and has been calm for 6 years.
I could also add that I have other autoimmun diseases and my gastro/hepatologist thought that we should try to get of the chloroquine due to the good respons and severel years of treatment.
It took 2 months then my livervalues rose again so I guess I have to live with that med for the rest of my life.
I started taking it as soon as I saw the increasing values and it has calmef down to normal values again.
I know there are at least two or three with AIH here. Are you permanent on meds?

I have had one liverbiopsi at the start 2008 and one ultrasound. Thinking about the cancerrisk sometimes as I also got IBD but I guess I get to know someway I mean by rising livervalues or pain but the thought crosses my mind from time to time.
How about your checkups is it only bloodworks or what?

Let-it-pass

Thanks!

Hi there....I have AIH, was diagnosed 18 months ago. Currently only taking Imuran and my enzymes are in the normal range but are creeping up (AST at the very high end now) the last few months. For some reason I also have sub-clinical progression of damage occurring. In the last year damage has progressed from bridging fibrosis to stage 4 cirrhosis. This is causing spleen/platelet issues and esophageal varcies. I find this quite disturbing since technically the Imuran has me in medical remission, but things haven;t calmed down.

There was talk when I first started meds that after 5 years they would try to wean me off completely and hope for true remission....but if I flared again I would be on Imuran for life. The cancer risk also scares me...I think about it a lot.

Besides monthly bloodwork I have ultrasounds scheduled every 3 months from this point on. Also had a gastroscopy last summer which is when they discovered the varcies. Have never had a bleed yet and none need to be banded. I believe the report said annual gastroscopes to check on those.

I'm still undergoing lots of tests to look for other autoimmune disorders that could be contributing to some of my unresolved symptoms.

How do you feel? The most frustrating part I find is that I still struggle with joint/muscle pain and weakness, fatigue, headaches and a whack of nausea/gastrointestinal issues.

Hi,

I have AIH and been on meds for about 8 years. For me I am told I will be on an immunosuppressant for life since I can't seem to stay in remission.

To be honest, I have times when I'm sick of taking pills and my doctor gives me a break for a week but I'm monitored closely. I do labs every 30 to 90 days and ultrasounds yearly and see the doc quarterly.

Hope this helps.
Erin

Hello all!

I, like Ann, am doing very well...although, I see my hepatologist for my annual check in a week and a half...so I'll see what my bloods are up to now :) I have bloods every 6 months, see him once a year and have an ultrasound. I've only had the one biopsy at diagnosis. I had fibrosis with no cirrhosis so I will be on the aza for life plan. When I spoke to my hep about cancer risk he said it's usually highest after 20 hrs. At that, it's only an increased risk, not a guarantee.

I have asked about follow up biopsy but he says there's no reason. Farmchick had mention her issue and the past so I asked again and he said he wasn't concerned about it with me. Maybe something on my initial biopsy made him not think underlying progression was possible? I don't know.

I have also had full colonoscopy and endoscopy and all was normal. Maybe I'll press him again for more tests this year.

Farmchick

Why aren't you on preds as well?

Hey again

Cant understand how they dare do biopsis severel times. It scares the liver as well.
I guess I for once can consider myself lucky not having many other symtoms. Anyone else having severel autoimmun diseases?

Let-it-pass

The real damage to me occurred when I flared after being off meds for 2 years and my local gastro didn't treat it aggressively enough. I am now looked after by a specialist liver unit who are really up to speed on everything - and I see one of the heps who specialises in autoimmune liver diseases so that helps as well.

I have heard of a few (but only a few) whose damage got worse despite normal blood test results. It is one of the reasons some heps give to do biopsies every 5 years or so. Although most don't do that any more. Regular ultrasounds and/or Fibroscans are probably the best way to,pick up potential issues which can be investigated further I think.

Enjoy,

I've been off Pred for a little over a year. #1 reason is my enzymes are within the normal range...therefore my doctor says I don;t need it. #2 reason is I am beyond sensitive to Pred. It causes me serious psychological issues...paranoia, psychosis, etc. If my levels increase beyond normal ranges then I will be put on Budenoside and hope that works.

No one can answer why I continue to develop damage. My last visit beginning of January, my doctor actually said she was stumped...not something you really want to hear. She ordered more bloodwork and the ultrasounds and that's where we stand at this time. I'd like a second opinion, but in order to see another Hep I have to travel to another province 1100 miles away. However, there are Heps that specialize in AIH there so I think it would be worth the trip.