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Posted 9/25/2012 2:29 AM (GMT 0)
Hi Everyone,

I have been lurking here for about a month. I have been a member of the Crohn's forum for a long time but haven't posted much there in the last few years.

Anyway, I was diagnosed with Primary Biliary Cirrhosis (PBC) a month ago. I went for my annual check up with my GI and he ordered the usual blood work. When the ALP (110) and ALT (64) came back high he ordered the AMA, which came in as great than 1:40. A liver biopsy was done to confirm the diagnosis. Other blood tests that are abnormal are Globulin, GFR, HGB, HCT, and Eosinophils.

So far I have only talked to my GI on the phone (he went on vacation for three weeks) and my appointment with him is in October. I am not on any medications yet, just waiting to see him to get the full story of the diagnosis. Unfortunately, this has left me with a lot of time to read about PBC and wonder what my future holds.

I found some great information here and I also noticed a great support society here. I want to thank you for all of your efforts to help people understand and cope with what ever liver disease they have.

Paula
Posted 9/25/2012 2:57 AM (GMT 0)
Hi Paula,
Welcome to the forum...the hepatitis side. I am sorry that you have been dx with pbc. As you have already noticed, everyone here is really nice and is so willing to share their story/experience with others. I don't know much about pbc, but I am sure one of our moderators will be along soon to welcome you . Please take care.

Emma
Posted 9/25/2012 2:58 AM (GMT 0)
Hi, Paulad, and welcome to the forum! My co-moderator, Dany, has AIH and is very knowledgeable about other autoimmune liver disease. I will alert her to your post. You can do a search above for Dany and it will bring up her posts.

I do think you should be seeing a hepatologist instead of a GI doc.

Hugs,
Connie
Posted 9/25/2012 3:07 AM (GMT 0)
Connie is right. Most GIs aren't as knowledgeable as hepatologists. Find a good one, it will make a difference.
Posted 9/25/2012 5:22 PM (GMT 0)

Hi Paulad and welcome to HealingWell!

Since your levels don't seem really high, I would be happy that you were diagnosed early.  I would think he'd start you on meds when you see him in October.  The usual treatment for PBC is Ursodiol.  It's a bile acid and keeps the bile thin...which is necessary as the cirrhosis from PBC is due to bile duct blocking and backing up as the ducts are attacked.

What meds are you on for the Crohn's?

Posted 9/25/2012 7:40 PM (GMT 0)
Hi everyone,

Thank you for the warm welcome.

My GI doc is a specialist in autoimmune diseases and I think this is why he caught the PBC so quickly. He did have a hepatologist in the same practice perform the liver biopsy, but I have to say I didn't care for his bedside manner much. The practice has 12 GI's and 3 hepatologist in it, so I will definitely ask if he is conferring with them or if I should see one of them instead for this portion of my autoimmune issues.

Having multiple autoimmune diseases makes it difficult to know which doctor I tell what too. For example, I went to my GP about six months ago because my legs itched all the time and she put me on a steroid cream. It helped but didn't fix the problem so I then got a Kenalog shot which made it stop. After reading the side effects of liver disease I wonder if the leg itching is part of this disease or just my body overreacting to something else entirely. Very frustrating.

As for my other meds, I take Librax and Cholestid for the Crohn's. I have the form of Crohn's that causes inflammation and scarring in the intestine eventually leading to a blockage. (Sounds just like PBC only in a different part of my body). Anyway, since my surgery to remove the terminal ileum and 6 feet of small intestine I have been doing pretty well. I take Advair 50/500 and Singular for Asthma/COPD. I also take estrogen and progesterone for early menopause (I am 49). I will have to find out if any of these drugs are going to be a problem with the new diagnosis as well.

So many questions!

Paula
Posted 9/25/2012 7:42 PM (GMT 0)
Dany,

I forgot to ask something in my last loooong post. What are your thoughts about taking an immune modulator since I know have more than one autoimmune disease?

Thanks,

Paula
Posted 9/25/2012 9:34 PM (GMT 0)
A good bedside manner does not mean a doctor is good at what he does. While it's nice to have both skill and personality, I'll take a hepatologist with no bedside manner who really knows his stuff over someone who is not very skilled but has a good bedside manner.

Hugs,
Connie
Posted 9/25/2012 10:00 PM (GMT 0)

Paula,

Since you have a good and established relationship with your GI and he is in a practice with hepatologists that he can confer with, I think it's fine to stay with him.  He seems to know what he's doing if he didn't hesitate to check your AMA when there was a slight increase in your ALT & ALP and then ordered a biopsy without further hesitation.  I hear it a lot that people's docs refuse to order a biopsy and just want to watch LFT levels for a while...that's when I stress the importance of having a hepatologist.  If you ever feel like he isn't taking your liver issues seriously or ordering tests quickly, ask to see a hepatologist.

I would definitely ask about immunosuppressants.  I have found online that there isn't any truly conclusive evidence that they help with PBC but one paper I read said CellCept (mycophenolate mofetil) may work in conjunction with Urso.

Posted 9/25/2012 11:25 PM (GMT 0)
Are ALT and ALP basically the same?

Hugs,
Connie
Posted 9/26/2012 12:26 AM (GMT 0)
I think some labs further abbreviate Alk Phos to ALP but I could be wrong.
Posted 9/26/2012 4:03 PM (GMT 0)
Thank you for your insight and suggestions. I see my GI next week so I will know more then.

I don't know much about labs either but these two were listed separately on my paperwork.

Paula
Posted 9/26/2012 9:00 PM (GMT 0)
Dany, you are right: ALP = alk phos

Hugs,
Connie
Posted 10/11/2012 6:18 PM (GMT 0)
Hi Everyone,

I saw my doctor last week and I am feeling better about things now. I have stage 2 PBC and am asymptomatic. He put me on Ursodiol like you said, and I am figuring out the best times to take it to work with the side effects. Of course he wouldn't give me a time frame for future problems, didn't really expect him to but had to ask. He told my husband that if I was his wife he would tell me to live my life. That's what I am going to have to do or I'll drive myself batty stressing about what if.

I want to thank all of you for your support and help during the waiting period and confusion about what my future would hold. I wish you all the best.
Posted 10/11/2012 7:51 PM (GMT 0)
Paulad, I agree with your doctor! Live your life and enjoy it to the fullest. There's no sense in worrying about things that may never happen.

I hope you will stay in touch and let us know how you are doing.

Hugs,
Connie
Posted 10/11/2012 11:05 PM (GMT 0)

Paulad,

That's good news!  I don't have any trouble with Urso but I'm on a lower dose than PBCers usually take.  I take it twice a day, with breaky and all my other meds and then at night before bed.

Stress is bad for "normal" folks but it can cause flares for people with autoimmune diseases so you do have to try to limit your stress.  You never know what life brings so you should just live it!  That was great advice!

Posted 10/12/2012 12:34 AM (GMT 0)
What are your side effects from ursodiol? I take 300 mg., three times a day and have never noticed any problems.
Posted 10/12/2012 4:15 PM (GMT 0)
You all are so great!!!

David,

I am taking 300 mg twice a day and the issues were nausea, dizziness, and diarrhea. I've learned to take the Urso with meals now and I added 1/2 packet of Colestipol before bed to decrease the diarrhea.

I never ate breakfast before and I think that is what was causing the nausea and dizziness, so I am now drinking a breakfast shake with the medication. I had to do some experimenting with the Colestipol to get the dosage right because I was plugged up one day then in the bathroom most of the next. I think I have a good balance now because the last couple of days have been much easier to tolerate.

Dany,

My husband calls me the queen of stress because I can stress about whats for dinner three days from now, lol. Stress has always been an issue for me as long as I can remember and I have never found a way to decrease it, its just part of who I am.

Thank you again for the support!

Paula
Posted 10/12/2012 4:49 PM (GMT 0)
My docs told me to eat before I take my meds. I try to, although breakfast has never been my thing. Now, I eat some fresh fruit first thing and then my meds. With ursodiol you're not supposed to eat dairy products an hour before, or after taking it. Also, omeprazole was prescribed for me, as my docs said that many drugs are hard on your stomach.
Posted 10/12/2012 5:08 PM (GMT 0)
I also take omeprazole.

Hugs,
Connie
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