Skdavis

[skdavis59]

Hi everyone! I’m 59 yrs old. First time to post....diagnosed in 2011 with PBC/AIH overlay. Last biopsy I still had no scarring. Have taken Urso since 2011. Now have a lot of symptoms and other things going on lately. I also have the thyroid issue, fatigue and lots of muscle and joint pain. Also have osteo arthritis. Loss lots of hair last fall; still comes out but not quite as bad. Feel so bad I don’t know how much longer I’m going to be able to work. Good to hear from others with this disease.

[Ktltel]

Sweet picture! 😍❤

Im sorry your not feeling well. Sounds like stuff may be going on. Can I ask, have you ever had a fibroscan? Did they stage your PBC back in 2011? How were your most recent labs?

My hair used to be so thick. Not any more. I also have RA. So the drugs for that (sulfasalazine) and URSO are doing a number on my hair and who knows what else. But, what are we to do? Gotta take our meds. The side effects of URSO come with a list of symptoms too. You probably know that.

Glad you found us and posted. Nice to meet you.

Stella

DX PBC 10/2016

DX RA 4/2017

[skdavis59 in reply to Ktltel]

No I have not had fibroscan. He mentioned last time and said we may do that next. I’ve had 3 biopsies. My ALP stays elevated. Around 180- 196. Go back Monday to Gastro. My cholesterol is close to 300 which he says is normal with PBC.

[Ktltel in reply to skdavis59]

Did they ever stage your PBC in 2011?

[skdavis59 in reply to Ktltel]

About three 1/2 years ago, the Dr. said stage 1 since I had no fibrosis. I had another biopsy in 2017 (April) and there was still no fibrosis. My Dr. said with elevated ALP it means there is inflammation. About 15 years ago I was refered to a hepatologist due to elevated liver enzymes and I had a sphincterotomy of the duodenum (bile duct area). Was really sick due to 1st procedure not working and causing me to develop pancreatitis. My enzymes never really got back to normal; that's why I think I've probably had this liver disease longer than 2011.

[ninjagirlwebb in reply to skdavis59]

What was the reason/reasons for doing so many biopsies? I understand the first one for diagnosis. Fibroscan can detect fibrosis etc. Just curious.

[skdavis59 in reply to ninjagirlwebb]

The first one was 2005 when I had elevated liver enzymes. It was sent to Mayo Clinic and came back as possible Wilson’s disease but said it was a very small amount of tissue to diagnose. That is when I was sent to the hepatologist. Second biopsy was done in 2011 and sent to Washington Hospital in St Louis for diagnosis. That’s when I was diagnosed with an overlay syndrome of PBC/AIH. Since I’ve had two more to see if there is scarring.

[skdavis59 in reply to skdavis59]

I did not have Wilson’s Disease.

[ninjagirlwebb in reply to skdavis59]

Thanks for sharing. Try to get the fibroscan for monitoring scarring. It is much less invasive than biopsies are.

[skdavis59 in reply to ninjagirlwebb]

Ok. I will. Thank you.

[Lawyers]

As I understand it there is no staging PBC. They stage the condition of your liver. I also have overlap like you have. Have had two biopsies one 2004 and one this year. I am stage two with no changes. I have been told my several hepatologist it is the best to accurately stage. My liver is functioning normally since there is no cirrhosis. My alkaline are elevated and I started URSO two months ago. So far no side effects and will not know if it working till my next lablabwork. It sounds to me that you other disease may be causing your problems. I am in the US and it is different than Europe. I am 61. My autoimune is mild. I have checked eith Mayo and other vitals and they still agree biopsy is best since I waited so long to go d out my status. Honestly I did not want to know. If you develop chirrosis and it decomprnsates you will know. I have spoken to several transplant patients. My best to everyone going through this!

[skdavis59 in reply to Lawyers]

Thank you for reply. I am also in US.

[littysgirl]

I am also in the US, New Jersey. Since so many people mention Fibro scan, I asked my gastroenterologist about having one done and he looked a little confused. He said he didn’t know who did them. A lab nearby used to but they stopped and he didn’t know who else had the equipment because it was something that was not done that often in this country. I don’t understand that. His office got me a list of three labs that I could go to for this fiber scan. One was in New York City which I avoid whenever possible. Doesn’t matter what you’re doing, it will take you all day and cost you over $100 to get in and out. I’m clearly not a fan. The other two places were a good distance from me and then areas and I am not familiar with, so I ended up doing nothing but I would love to have a fibro scan and get some sense of if I have progressed or not since I was diagnosed.

Has anyone else had trouble finding a facility that does this? I mean, I’m in the New York metropolitan area. It’s not like I’m out on a wheat farm someplace not near anything. I don’t understand why i can’t find a place to go to that I can figure out how to get there.( I know that the sentence structure there needs attention. )

[Lawyers in reply to littysgirl]

That makes no sense. They have fibroscan everywhere. I am in the South. There is also new MRI that is supposed to be good. Contact the liver foundation. That is where I get most of my information. I go to a large teaching hospital. They recommmended biopsy. It was not painful. Done CT so I could look. My organs where not enlarged etc. I have learned to read them. Radiologists was very nice. He went out and beyond to put my fears at ease. I honestly thought I had compensated cirrhosis. My last blood test was in 2009. My alt and asp were slightly elevated. But they always are. Don't know when alkaline went up. I lived a different state when first diagnosed and first biopsy was done there with different hep and hospital. That was 2004. Did not drink or do anything for 5 years. I was scared. Then we moved and I decided to live normal life. I drank wine exercised worked and now new biopsy shows no change. Don't understand. But watching everything since my alkakines are up and so is my alt and asp. At this point I don't want to live in fear like I did in 2004. I don't have cirrhosis. I do have very rare disorder called Grovers. Not many doctors have heard of it. Not even my hep or primary. I had to go to dermatologists and have three biopsies. You get tiny red blisters that itch like hell and bleed. It is a nightmare but apparently not related. It is better now. Thank god.

[ninjagirlwebb in reply to littysgirl]

Your gastro is misinformed...any of the major health facilities in the metro area should have fibroscan i.e., Mount Sinai, NYU Langone, NY Presbyterian. The technology has been approved by the FDA. However, your options are less if you choose to avoid NYC.

[ninjagirlwebb]

Here are the facilities with fibroscan in NY & NJ:

echosens.us/find-a-facility...

echosens.us/find-a-facility...