First blood draw after diagnosis, and pain...

[JennyCville]

Hi friends...so I have good news, but troubling symptoms. First the good news.

12/18/2015 (Pre-diagnosis) Alt 116, AST 89, Alk Phos 388; GGt 165, AMA 158 (!)

On January 4, 2016 my decaying gallbladder was removed, and liver biopsied, confirming pbc (stage 2, with some stage 3 inflammation. still confused by this) I had LOTS of post-op complications, because of my immune deficiency.

Had hepatic function lab draw last week (He wouldn't test AMA or GGT, as they wouldn't be dropping yet after surgery. ) I began the urso on January 14. Results were encouraging for a first look:

Alt 72, Ast 49, Alk Phos 156.

But I am still having pain in the liver area...I know I've asked about this before, but it's still troubling. My pain never goes away, and sometimes gets really, really bad. It hurts to the touch. I had a CT scan on Friday but no results yet. (The results are in, but the dr hasn't given them to me yet. He is TERRIBLE with getting reports back to patients. I am putting up with him because the NIH is taking over my care on April 11th, which is amazing.

Here's my quandary..because of the immune deficiency, if I have an infection, I won't run a fever...only the imaging will show that. For those of you who have had liver pain...has it been a constant, sometimes SEVERE pain? Any ideas as to what that could be?

[MK3117]

I'm sorry to hear about your ongoing pain. I also had a liver biopsy during the first week of the year. It took at least a month before the pain subsided. It wasn't constant, but was very sharp, almost breathtaking, early on. Occasionally I may feel some discomfort, but it is fleeting and I'm not sure if it is liver related.

I'm glad that you will be gaining new physicians soon!

[Rockie]

JennyCevill. For starters congratulations with the improved liver tests. The pain in the right side for me it comes and goes. Have had it for so many years. I have my own opinion about the liver pain, and think it is when the bile ducts are heavy inflammed. I think it is cruel to let patients wait for results, as it is all one thinks about, and for them you are just a number. They always say if it is bad news, they will tell you immediately, so let that be comforting for you. Good luck

[loriejw]

Hi Jenny: I have had PBC since 2010 and I can't remember not having pain in my right side since. sometimes just a chronic ache and other times a deep ache. It doesn't matter if my labs are good or bad. Always present. I thought I was a bit of a hypochondriac. not that i am normally, but perhaps about this. I had a Fibroscan last week and it set it off allover again.

So i guess my point is maybe some of us are very prone to pain and others not.

Hope you continue to improve. I am considered in stage 1 and not progressing.

Wishing you the very best!

[JennyCville]

You guys are awesome....my current doc is so dismissive of my pain, and says it's impossible to have pain in the liver. I will be with a new doc on April 11, who already answers my emails and explains the pain. It makes me feel much better to know that many of you have pain, without your disease progressing. I am going to hop out into the sunshine now...it's 80 degrees here today and the vitamin D is just pouring from the sky