Just diagnosed

Looks like a combo of AIH and PBC with advanced Cirrhosis

Could someone list the key meds for each so that we can make sure we ask the Dr. all the right questions?

Also, do the meds for one affect the other?

Is there a generally acceptable nutrition plan or diet that is proven? Can't seem to get all the info to line up here.

Are some of the natural solutions generally trusted, ie milk thistle, etc....just starting to read and very confused if experience has proven any success.

Thank for any help you can give.

Welcome to HealingWell Northernlights!

I'm assuming you had a biopsy and that's how you know you have advanced cirrhosis?  I'm surprised that is it advanced and that you didn't know earlier that you had either condition.  It is not uncommon for them to be overlapped.  The meds are different for both but not contraindicated in either.  So for AIH, patients generally start on a high dose of prednisone to decrease the inflammation.  Then an immunosuppressant is added (usually azathioprine but if it can't be tolerated, then CellCept, 6-MP, Tacrolimus, or Cyclosporine).  As inflammation resolves, the pred is weaned but most stay on immunosuppressants indefinitely to try to reduce the risk of a flare.  The usual treatment for PBC is Ursodiol.  I take Urso but don't have PBC, just AIH.  My hepatologist thought I was having some cholestasis due to the azathioprine.  I didn't want to decrease my dose and risk a flare so I asked if we could just add the Urso (it's a bile acid and helps thin bile)...that worked so I am treating that side effect.

Per nutrition...like anything else, eat a healthy diet (fruits/veg) and since you have cirrhosis, no red meat (it makes the liver work harder when digesting).  Decrease salt intake but also check with your hepatologist in case you have a salt imbalance.  Also ask about water consumption.  Do you have fluid accumulation?  Like ascites (fluid in the abdomen) or fluid build up in your legs?

Also since you have cirrhosis, I would check about Milk Thistle.  I stay away from all herbal remedies.  It's also best to check with your hepatologist about any OTC medications.  You are seeing a hepatologist, correct?  patients who already have cirrhosis do have different limits than those of us who don't.

I look forward to hearing more about how you're doing and what your LFTs are and how you found out you were ill.

Thanks all for such helpful information.

Yes, had a biopsy to diagnose.

We are also surprised that things were not obvious sooner, although looking back we can see it more clearly. I have not been one to go to a doctor quickly and usually just muscle through, but it was the fluid accumulation in my legs that could not be explained and then of course a blood test showed the problem (4 months ago).

We are in Canada where the economics are good for such a thing, but the wait times are very long to find anything out.

Is there a good diet that we can start right away (still waiting for the nutrition side of the medical system)?

Does it make sense to consider a living donor transplant proactively or put another way, at what point would that be a consideration? My husband is 56 and it appears that he can be too old soon.

Grateful for your thoughts!

I was curious about the age limit for a living donor.  From the little bit of research I did online, the age requirement seems to vary from country to country and center to center.  Some say the health of the donor is more important than age, while others say the cutoff is between 45 and 60, depending on the center.

Since your husband is 56, I think it would be a good idea for him to be evaluated as a live donor.  Will he be a blood and tissue match for you?  Does he have health problems that may prevent him from being a donor?  I think that you should go ahead and have him evaluated as a possible donor before making any decisions.

Depending on how advanced your cirrhosis is and how well meds work for you, you may end up not needing a transplant.  However, if your cirrhosis is advanced and you have been diagnosed with end-stage liver disease (ESLD), a transplant may be the only option.

Hugs,

Connie