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sarah83

Registered: 28/07/08
Posts: 38
Reply with quote  #1 
Following my last hospital appointment of this year, I'd really like to hear from anyone who has experienced anything similar or knows anything about what I've been told!

A bit of background: I was admitted to hospital in Feb 08 with jaundice and high levels (can't remember what they were).  I've had a biopsy, MRI, 3 ultrasounds and regular bloods, and have been on pred since June 08, from 45 down to 10mgs.  I've been tested for Wilson's Disease, viral hepatitis, etc., and am a carrier of the Alpha-1 Anti-Trypsin Deficiency gene (probably spelt wrong! and not a sufferer thankfully).   I am still technically undiagnosed though - several times, including the last time I went, I was told it is most likely AIH, but now they aren't sure.  I've been told I did have it, and then had it retracted.

So my latest news is I was told that my liver now has scarring, and I need another biopsy after xmas - and where they need to take a sample from is where it's scarred.  They also said my liver has shrunk and is the wrong shape!  It was very inflammed, is that a good thing then that it's shrunk?  I am now also on antibiotics because the pred has given me incredibly painful "acne" all over my face and neck (I honestly want to scream if anything touches my skin).  They've said the pred isn't working very well on me because my levels are still too high, although not as high as they were in previous months, but they don't want to take me off it completely in case I take a turn for the worse.  They have tested me and say I can take azathioprine (probably spelt wrong!)  but they won't prescribe it until I've had my second biopsy.

They are still calling me a mystery, we've been all through my medical history and there are no red flags for why AIH has suddenly reared its ugly head.  I have been blessed with good health up till now, and all we can think of is I had a bad cold and was very stressed just before the first signs started (about a year ago now - it started very slowly before I eventually went yellow!).  I am extremely tired now and work from home permanently.  I feel like I can "feel" my liver - the odd twinge and just a weird sensation, but I wonder whether that is all in my mind after my recent diagnosis since it's certainly not painful.

My question to you all is how long did it take for you to get a concrete, "here's what you can tell your boss", diagnosis of AIH?  Also, have any of you been told your liver has shrunk, or is a funny shape?!  Can scarring go away?  I'm worried that even after my second biopsy, they'll still not know for sure whether it really is AIH or not.  It sounds strange but when they first told me they were sure that's what it was I was just happy to have a diagnosis, but now I don't even have that for certain.


That's enough of me moaning!  I hope everyone is keeping well in this cold weather (thank god it's winter, I can cover up all the pred weight and rash with warm clothes!!)
Jam

Registered: 19/12/07
Posts: 99
Reply with quote  #2 
I can't answer all your questions, hopefully someone with more experience can...

But, from what I know, have they established that your immune system is attacking your liver, or might it be something else? What did they say their reason was for changing their minds and thinking it was something else?

Scarring cannot go away I'm afraid, not yet anyway. though depending on the damage to the liver, the liver will be able to repair itself steadily - providing that the damage is occurring slower than the recovery processes. Though once it enters the stage of cirrhosis, any recovery is unlikely. that said, I did some research, where scientists have developed a compound that destroys all dead liver cells, essentially reversing liver damnage. I contacted the one responsible for this study, and she told me that it is still in talks with pharmacies and I don't think human trials have begun. Though, I don't think that this drug will be available mainstream until another 2-3 years at least.

I know what you mean by you can feel your liver, I too have that odd sensation, and sometimes have for prolong periods and even days.

Personally, it took me a year to get some sort of diagnosis done, and this year I was going on without meds so I was experiencing the symptoms everyday. I haven't even had a biopsy done as yet, but they are 99% sure it's AIH.

I think with the new biopsy that is going be done, they can only get more information about your condition, it should be able to help diagnose or at least allow them to get closer and understand what is going on.

Good Luck!

Judy

Pro Member
Registered: 02/12/06
Posts: 3,887
Reply with quote  #3 
Hi Sarah,
Like Jam, I too will have to wait with you for the experts on this one.  Hang on they will come on.  Very sorry to read your story.
Jam, what new kind of biopsy are you speaking of?  Judy

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Judith
sarah83

Registered: 28/07/08
Posts: 38
Reply with quote  #4 
Hi, thanks for the response

Jam, it's really interesting to hear it took you a year to get any diagnosis - it's reassuring too in a way (as is the weird feeling in the liver).  The reason they aren't sure it's AIH anymore is because I'm not reacting as fast to the pred as they usually see with AIH, but to be honest I've had quite a few side effects from it and I think perhaps my body just doesn't tolerate it very well at all.  At the same time, AIH is the only thing they think it could be!

Thanks for the link, I'll give that a read   I hope they can start treating me with
different meds soon so they can slow down the damage.

Judy - thanks for your thoughts

Jam

Registered: 19/12/07
Posts: 99
Reply with quote  #5 
Judy, I was referring to the biopsy she is due in for...

It's true that not everyone will  react in the same way to pred or any other drugs for that matter. But I think the fact that the doctors are basing it on the response to the medication suggests they probably haven't considered the fuller picture or any other causes for your current condition.

Though, it's good that they have actually started you on something. In my case, they took a year to make the decision to give me the medication and in this year one can only image the damage to the liver.

Good luck!

Judy

Pro Member
Registered: 02/12/06
Posts: 3,887
Reply with quote  #6 
Jam,
I think I need to stop posting. Am full of drugs.  I just reread your post.  Sorry, yes my mistake.  Hope you two are doing well. Judy 

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Judith
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