Mystery Diagnosis. Please help!

Thanks for the update!  Was thinking about your mom on Tuesday.  Great news that her levels are decreasing.  I am ever the optimist that she will avoid a transplant if she's responding to the steroids.  Fingers and toes crossed!

Hi mom and sis (since they're reading with you )!!

Liverette, this much I can say:  PBC is a chronic autoimmune disease that attacks the bile ducts within the liver, whereas cirrhosis (alcoholic or from hepatitis) is scarring of the liver itself.

Hugs,

Connie

Yesterday, mom's doctor confirmed again that she has AIH most likely induced by Lipitor.  Her ANA tests keep coming back negative but the biopsy confirmed it.  They are waiting for her total bilirubin to go down below 3 (hers is 3 now) to put her on Imuran.  

Her ALT and AST went down 200 points each from last week and Bili went down to 3 from 4.2.

Shouldn't Prednisone lower her AST/ALT drastically if she had AIH?  Her enzyme levels are very slowly dropping.  It's been 3 months.  Are there other tests other than ANA and biopsy to confirm AIH and if in case she does not have AIH, will Imuran hurt her?

Dany, we also asked for AMA test, and they did, so we'll get the result next week.

We all wish you a Happy Thanksgiving and thank you for being there for us always!

Love,

Liverette

Mom has been on Prednsone for almost 4 months. They tapered it down gradually the first 2 months, to 2.5mg and when the enzymes went up again, they went back to 40mg. What I understood that usually Prednisone gets the AIH patients' enzymes down quickly. We're still so happy that her numbers are going down and she feels fine. Like I said, they want to give her Imuran in couple of weeks, and we'll be watching her enzymes the first few weeks.

Thanks again for checking my post and have a wonderful thanksgiving.

Liverette

I hope all is well with all of you. Haven't written for 2 weeks, but I have some updates. Mom's bilirubin is down to 1.6 now. Her color is normal and she looks great. Her AST and ALT down to 299 and 504. A bit slowly coming down but we're grateful. Her Alkaline Phosphatase is 289 from 489. Her MELD score is 8! The doctors think that she's slowly getting stabilized, but they wanna see her liver enzymes completely normal. Her endocrinologist put her on diabetic's diet, and prescribed her Glimepiride 2mg, and mom started taking the medicine yesterday. Next week we'll get another blood test to see if this new drug has any effect on her liver enzymes.

Our appointment with the UCLA specialist is on January 20th. We tried to get her in earlier but no luck. We're so eager to see what the other doctor has to say.

We will see her liver doctor next tuesday, and perhaps, he'll prescribe her the Imuran then. He was waiting for her bilirubin to go down, because he said that Imuran tends to elevate the bilirubin a bit.

Wishing all of you the best!

Liverette

Liverette!

That sounds fantastic!!  The only time I had elevated bili after being off the pred was last fall (I had been on aza (Imuran) for 2.5 yrs at that point).  It went up to 2.4 and the hep thought I was having cholestasis from the aza so he wanted to lower my dose but I said no.  I asked him to try Ursodiol (a bile acid) and he said OK.  That worked so I'm still on it.  I actually had my 6 month check up with him this morning and ALT is 17, AST is 18 and bili is 1.  So the Urso is still working just fine and the aza seems to be doing its job of keeping me stable and in remission so yay!

Have they thought about CellCept instead for starters since it's fast acting?  They can always switch her to aza later.  That's how I started.  CellCept was added a week after I started pred then a couple months later I piggy-backed both till the 2 month mark for the aza and dropped the CellCept.

Which hep is she seeing at UCLA?  A cousin of mine is a gastro/hep there.  He's the reason I went to see the hep here in SD when I first fell ill.  He called me up after I faxed my labs to him and was very firm with me that I needed a specialist.  My PCP (at the time, I dropped him as fast as I could) just kept telling me it was probably false negative Hep A and I shouldn't worry.

I'm so happy to hear your mom is feeling better...really super news!

Thank you again for checking my posts. We initially wanted mom to see Dr. Francisco Durazo at UCLA, but the wait was too long, so we went with Dr. Sammy Saab. Hopefully, he's well knowledgable about Drug induced auto immune hepatitis.

Dany, if you get the chance to see your cousin during holidays, please ask him about this doctor.

Besides this, we're waiting to see her hepathologist again next tuesday and see what she says. I'll keep you posted.

Have a great weekend. The weather is gonna be so nice in southern California, that I might take mom and the family to the beach for a picnic.

Love,

Liverette

We've been in the 20s here in North Florida the past few nights...supposed to be 30s tonight.  No beach. 

We usually don't like to bother any physicians in our family too. So I can understand your dad. Thanks for trying anyway. You're just so great.

Mom will have plenty of sunscreen and also a beach umbrella. Hope you all have a good weekend.

Liveretto

Liverette!

What fantastic news and great numbers!

I used to have bloods done at minimum once a month (back in the early days it was way more often).  I'm at every 3 months now.  So it's great that you insisted she had them regularly and I'm surprised they didn't tell her to.  The imuran can cause decreased white blood cell counts so be sure they put an order in for a CBC as well as the liver panel.  Some folks can't metabolize azathioprine.  Did they do a TPMT test on her?  I never had one and luckily, I haven't had problems with the drug...most people don't have severe adverse reactions.  The TPMT test can show whether she can tolerate it and at what levels.  So if they don't run it, just be sure to monitor for excessive nausea and digestive issues.  Initially there will be some till her body gets used to it but it won't be excessive.  Maybe a little feeling of unwell.  Her hair may thin too (mine did) but then after a few months it goes back to normal.  My hair also got curly/wavy - that didn't go away      Check the insert so you know what to be aware of.

Happy Holidays to you all as well!

Liverette, so good to hear that your mom has improved.  I'm really sorry that your AMA was positive.  Dany can tell you more about that.  If you use the Search function on the top right, and put PBC, you should bring up any posts on here about it.  I know we have several members or their loved ones with it.  It's good that the other tests are negative.  If you take good care of yourself, it will go a long way to prevent your disease from progressing.

Hugs,

Connie

A high percentage of 79%-94% of patients with primary biliary cirrohsis have a titer of 1:160 or higher but this elevated titer is also associated with cryptogenic cirrhosis, chronic hepatic obstruction and chronic hepatitis.

Occassionally associated with: pernicious anemia, thyroid disease, idiopathic addison's disease, systemic lupus erythematous and rheumatoid arthritis"

I found quite a few websites that stated the same thing.  Of course, it's not to say that something else isn't brewing (and I hope not) but with your LFTs being normal, I wouldn't stress out about it, if possible...you know the whole stress is bad for causing autoimmune disease flares ...

I'm surprised your AMA results came as an absolute number.  It's an antibody test and those are usually reported as a ratio (titer).  The titer corresponds to the highest dilution factor that still yields a positive reading.  So the more dilutions you have, the more positive the result.  I'm not even sure how they'd get 107 but I'm certainly no expert in that!

Keep us posted with what you primary says and if she orders more tests or sends you off to a specialist.