Bramuda Triangle of autoimmune disease

[Janehouston]

Hi all,

Wow, I guess now I am going to have this stupid PBC too. I have fibromyalgia, sjogren's, undifferentiated connective tissue disease. What the hell? My liver enzymes kept going up, the rheumatologist sent me to the hepatologist. She said loss weight you chubby lady, so I lost 35lb but my enzymes went up. Boohoo, sent me for ultra sound, fatty liver, woohooo, stop eating crap. Cool, no go still high. Go have MRI. liver look good, groovy, let's go for cocktails, not so fast. Those enzymes are not good and once like a year ago I had a positive AMA. like 1 stupid time. Now, biopsy day after Halloween. So I am off anti inflammatory so I don't bleed to death after the biopsy. So let's just say In a word. PAIN!

Soooo, simple questions for you PBC veterans, how bad is the biopsy through the neck? And how bad does this PBC suck. Do we get to drink at all or is it no cocktails ever?

Thanks,

Jane

[58goose]

I can only answer from my experience but as I'm only early stage PBC my consultant sees no reason for me not to have alcohol but in moderation and definitely not exceeding the maximum recommended units a week. However, through choice I only drink very occasionally but it's nice to know I can if I want to. I had a biopsy done but not through the neck - It was done in my side, halfway between underarm and waist. It was uncomfortable but only for a short while as it was done and it gave me a slight pain in the neck for a little while. No after effects. However, some people seem to have found it a painful experience but I'm not sure if that is because of the person doing the biopsy or a very low pain threshold on the part of the patient!

[DeeSree]

HI Jane,

I was diagnosed about 6 months ago had a liver biopsy after changing doctors about it. Mine was done through my ribcage and it was a breeze. It was done with guided ultrasound and they gave me something so I wouldn't remember it. I was never sore but took it easy for a few days. It was suppose to stage it but they never did. Since going on the meds Ursodiol my LFT were normal for the first time ever. I was told not to drink alcohol by my doctor but have read where some doctors have said in moderation. I am a lightweight on that but do like an occasional drink when at a social gathering and that is rare. I had one bourbon and diet coke with less than a 1/2 tablespoon of bourbon. just enough to taste it. I have never heard of the biopsy in the neck. Do your own studies on these things too. It has helped me.

Hang in there

Dee

[moepag]

At least your sense of humor is in tact ...a good thing! Can't help with the biopsy as I refused mine but I'm sure they will give you something to keep you comfortable. I think PBC is very different for everyone depending on other conditions you may have, symptoms, stage, age, etc...I am early stage and feel pretty well most days. My biggest complaint is sometimes overwhelming fatigue, right upper quadrant pain if I don't eat well and some joint pain. My doctor said that I can have alcohol up to the weekly amount recommended for all women which is 7 drinks per week. Does not recommend drinking all 7 at one time but a beer/wine /drink or 2 at a time is ok. He cautions that if it's difficult to limit intake then it should be avoided completely. Not easy!

Good luck with your biopsy - will be over soon!

Maureen