What would you do?

[JessiG19]

I need advice and opinions are very welcomed!!

So I recently started a Part time job on top of working another job. Within a few weeks I was so fatigued and my arms felt like they weighed 100lbs each. My fingers hurt and my joints we swollen. Not to mention the brain fog was bad too! I knew this was something more than just being tired and overworked.

So I went to my PCP. She did ANA and AMA and everything in between (I love my Dr, shes awesome) My ANA came back at 1:1280 and AMA 64 and I tested positive for drug induced Lupus. Which is really odd bc I dont take anything! But the kicker is my Liver panel is all normal. So my PCP sends me to GI Dr. Who pretty much thinks its PBC but isn't 100% bc my liver panel is all great!

So sends me home with the RX but wants he wants me to do a biopsy before taking it... which seems kinda aggressive without an actual diagnosis of PBC.

Should I ask for a MRI with MRCP first or a Fibroscan? Then..... if something pops up, do a liver biopsy?

I will say my symptoms are improving. Not as fatigued and my joints don't seem as stiff.

[periwinkle88]

If your liver labs are normal, the only way to confirm diagnosis is with a biopsy. I'd go through with it. Once you know what you're dealing with you can move forward with a plan/medication. When I was diagnosed my alkaline phos was low-normal (not typical for PBC), and my ALT and AST were slightly elevated. The pathologist who looked at the biopsy specimen didn't find PBC. I then took the biopsy images to a doc who sees a lot of patients with PBC, and he found a small speck on the edge that was classic PBC. He then sent the images to a second pathologist, who confirmed it. I was diagnosed at stage 0 (lots of benefits to knowing early). For me, it was a relief to know. And from there I was able to move forward with decisions about medication, how often to monitor labs, etc. One other thing is that food or anything I consume has the potential of making me ache, have stiff joints, headaches, etc. I've had to do a lot of trial and error to figure out a diet that works well for me, and feel so much better. Good luck with everything.

[Lu11]

I’d go with the biopsy! My blood levels are normal as well but I’m positive for ANA/AMA M2. I’ll ask for more tests when I see the specialist.

[KikiMilena]

A biopsy is the most reliable test you can have to be certain if and what is wrong with your liver. I know it is scary, and it is not a nice test, but if you have the chance to do it right away, it will save time and anxiety of feeling good and bad, and not really knowing what is going on.

[P13jne]

Hi JessiG19, I had a biopsy initially to confirm PBC as all my bloods were irratic. Don’t worry about having this carried out, it’s a definite outcome for results this way. Xx

[JessiG19]

Ok I think I’m gonna just schedule the test. Get it over with so I can either move on with a plan of action or move on with my life.

Thank you all. You guys made very valid points and it’s not worth the risk letting this fester into a worse stage.

I will make the appointment and keep you posted on the results.

Healings & God bless

[Sam1121]

Hi! I will tell you that my liver biopsy wasn’t bad at all!! It will answer questions! Good luck! Take your urso if it’s prescribed!

[Redbird5]

I too am in a similar situation. Thanks to everyone who responded it helped confirm my desire to go ahead with the biopsy. I would rather know what I am dealing with. Good luck and health to you!

[JessiG19 in reply to Redbird5]

Hi Redbird5! What were your symptoms ? Was your liver panel test normal too? It’s an odd position to be in. Not positive for pbc but not negative either. In between. Limbo. I hate it.

[Redbird5 in reply to JessiG19]

Hi JessiG19 my liver panel was normal. My ANA was run by mistake and that’s how I found out. My symptoms are dry eyes which I understand to be an indicator or an auto immune disorder. I also had a period of extreme fatigue, which I chalked up to depression but it was unlike any fatigue I’ve ever had. I also sometimes get itchy arms at night. It’s just itch without and rash or any hives or heavyness. If you looked at my arms you would say, your crazy there’s nothing there except red because you are scratching. I saw my hepatologist last week and he gave me the option to go for the biopsy and I told him I would think about it. My husband would rather I didn’t and doesn’t think I have PBC. Well I have to know, thats just my nature. Right now I’m symptom free knock on wood! Keep me posted on your progress.😉

[ninjagirlwebb]

I was diagnosed via a biopsy and then started immediately on urso. Biopsy itself was okay...it was my anxiety that was stressing myself out prior to it.

[Redbird5 in reply to ninjagirlwebb]

When you stared on Urso was your liver panel normal?

[JessiG19 in reply to Redbird5]

I haven’t started it. The dr wanted to wait until after my biopsy

[ninjagirlwebb in reply to Redbird5]

No, my liver enzymes were slightly elevated which was why my pcp pushed for a biopsy. When I was hesitant, he suggested that I see a hepatologist to convince me to get the biopsy. He convinced me, and the biopsy was inconclusive but the hepatologist sent the slides to a world renown liver disorder pathologist for a 2nd opinion. He diagnosed it as pbc and my hepatologist put me on urso immediately.

[PBC_FOUNDATION Partner Administrator PBC Foundation]

Please do join the PBC Foundation pbcfoundation.org.uk which is free of charge. This will give you access to so much up to date information. There is also a Q & A session on Thursday (21st) with Professor David Jones on Facebook. Feel free to email any questions you might have to [e-mail] and we will include the question for Thursday's session. You can view the session live at 2pm, if not the session will stay on Facebook and on the PBC Foundations YouTube channel.