Went to Dr today

So, after being diagnosed PBC/AIH overlap syndrome, my GI put me on prednisone (10mg long term) along with the Urso and Atarax. My last blood tests on Monday showed my levels elevated but still dropping. My bilirubin is at 6.9 now.

Saw my PC this morning and asked him if he could see my liver biopsy. He said it does confirm the PBC "moderate activity consistent with PBC." & that is said "chronic hepatitis " but nothing about AIH. My GI had said it was very early but that the AIH was very aggressive. She did not give me a stage when I asked, she said "this is not something you have had for years, the MRCP shows your liver is functioning fine". She said she thought this was brought out by the pregnancy hormones and then more so by the hormone shift after birth.

She called the pathologist who read my biopsy asking him to double check his findings for AIH as she was positive I had both so maybe that is why it is not indicated on the biopsy.

So I ask my PC isn't AIH worse than PBC, like it is tut one most likely to take me out? He said that he could not answer that. He said PBC is a serious diagnosis and that it is very rare so it is usually treated by a specialist not a general GI so he was wondering why I have not been referred on.

Anyway, the moderate activity has me shook. See my uncle also has AIH and when he got lymphoma they thought it could be related to the AIH meds prednisone and Imuran.

I am just.. sad? maybe frustrated? I don't know, it seems like those are conflicting reports from the same biopsy. "Moderate activity" seems further along than my GI indicated initially?

Any thoughts on this? I don't know. I'm just having a rough week so maybe I'm taking it wrong or harder than necessary.

8 Replies

  • I have both as well. I take 1000 mgs of Urso and I started off taking prednisone at 40 mgs and lowered my dose as my enzymes improved. I am now taking 10 mgs of prednisone and 50 mgs of aza thioridazine. My enzymes was very good last read in sept. My next apt is November 3rd at Mayo. My dr is hoping to burn out my autoimmune hepatitis. Aih can go into remission. My doctors at Mayo says that my condition is not rare at all. You need the right doctors. That's for sure. If one more medical professional asks me one time if I have hep A, B or C I'm not going to be very nice about it. Especially when I make it a point to say autoimmune hep with pbc. My vet says she has dogs with it. She knows what it is. So does her techs. Really there are humans in our medical field who is clueless

  • We are in Indiana so I'm being treated at IU. I have an appointment with a hematologist November 17th but that appointment was scheduled before I ever saw the GI to begin with by my OB/GYN when things didn't resolve after my pregnancy.

    Do you go to the Mayo in Jacksonville? My husband is straight up ready to move so I can go there. Well, that's not the only reason, but his job transfers anywhere worldwide and his body does not handle the cold well anymore so it is an option.

  • I respect my doctor at Mayo in Jacksonville very much. He will answer my emails when I have questions fast. If you can get there I would at least get a second opinion. My second opinion with Mayo saved a lot of potential damage to my liver.

  • Thank you for the info! It is definitely important to have a good doctor. I'm going to email my GI with my questions today.

  • My concern is how your prednisone is being prescribed to you. I am very early diagnosed. I have been taking prednisone since march. My first GI dr. Lowered my prednisone to soon. Thank god my husband had my second opinion ready for me at Mayo. Thank god. GI lowered me from 40 to 10 in three weeks. That's how it's prescribed for someone with asthma. When I had my second opinion the Mayo ordered all kinds of blood work. My alt was back up to the 700s again. My GI did not have any plans for me to have blood work or another visit scheduled. I would of turned yellow had I not had that second opinion waiting for me

  • Okay, I started on 20mg for 2 weeks, 15mg for 2 weeks and 10 mg from here on out. I have had bloodwork October 4th at 15mg and then on Monday after I had been on 10mg. Everything is still moving in the right direction. I'm getting bloodwork again in about 2 more weeks from Monday.

    I'm glad your husband had the second opinion set up. Can a person just call the Mayo clinic and make an appointment or do I need a referral? I'll try to find out on my own too. I just thought you might know off the top of your head.

    Thank you sincerely for all the information. I really appreciate it

  • It's easy and fast to get a Mayo apt. I was actually surprised how quick. You can check on line if they take yur insurance but you have blood work waiting for you. I didn't have that. You should be ok with elevation issues.

  • Okay, I do like my doctor. She calls me herself when she gets my results and is always very reassuring. I saw the Mayo clinic appointment request phone numbers online.

    Thank you!

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