Stage 3 Grade 3.5

I just got the results of my liver Biopsy.

Not good at all however, I am responding to the Urso and my liver enzymes are now in the 600 range (were 1700) and my AMA's are down 20%...

Not sure if either of those #'s right now just that they are down...

I'd like to talk to those of you in this stage and in this Grade Range...

how long have you been dealing with PBC and how are you feeling?

What is your lifestyle like? Do you ever get back to normal? I can't be on my feet for over 6hrs it just kills me!

This uncomfortable stiffness I feel from the fibrosis, will that go away as my liver rids itself of the inflammation as it is still doing with me?

I'm lucky that I don't deal with the debilitating itching or fatigue but I do deal with both...will that improve with this disgnoses?

I was told to watch my protein intake, too much and the liver can't excrete the ammonia byproduct of the protein breakdown and not enough and the liver can't start to repair the damage as it needs protein to do so...🙄 How do we know what is enough what is too much? I have an appointment to see a Nutritionist in August...can't get in any earlier...anyone know about this?

Thanks!

Tonia

25 Replies

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  • Dian I think

  • What country are you in? I'm in USA. I was grade 2 stage 1. I have Pbc and aih. My aih was 160 but elevated to 640 and my AMA was 180. At that time my gi dr screwed up my prednisone and prescribed it wrong. My alt was 723 and my alp was 143. My ast was 254. Luckily I already had an apt for a second opinion at the Mayo Clinic and that dr caught the screw up with my prednisone. Now all my enzymes are in perfect range. I have a second dr apt Friday at the Mayo Clinic. My Dr at the Mayo told me that my grade 2 is a zero now my AMA M2 is .8 because I have no inflammation. So far I'm responding very well to my meds. I hate prednisone and azathioprine that is what is prescribed for aih. Urso is for Pbc. I'm newly diagnosed in late Jan. I had CBC blood work last year starting in sept, oct, nov and December. My gyn kept ordering it for further testing purposes. All enzymes was fine. Then late Jan my primary called for routine blood work and yearly physical and that's when the shit hit the fan for me.

    You have to make sure that you trust yur Dr.

  • I do trust my Doctor! I love this woman she is just awesome!

    I'm heading in the right direction I know, just don't want any slip ups...no talk of prednisone, possibly the other new drug if my numbers stagnate or start to increase but right now the Urso is working. 😀

    I have been reading that the stage can regress, that is good! I just want to make sure I don't go into stage 4.

  • In in Virginia, go to Georgetown Transplant Center...Yup, freaked me out my first appointment! Lol

    I was like OMG! What didn't my GP tell me??!!! Lol. But it was all good... they treat people like me too...😀

  • I'm not sure if fibrosis can clear itself up but I'm taking prednisone because of autoimmune hepatitis.

    Urso worked fast and well for me. You really should talk to yur Dr. I'm going to ask my dr about my stage. He did say that my stage was good news and he's hoping to keep me at stage one and it not progress

  • No, fibrosis can't but I was told the surrounding liver tissue that is NOT damaged just inflamed will heal and regenerate itself...of course this means the URSO has to keep working to keep the bike ducts healthy...😀

  • Did you just get diagnosed? Or did you have Pbc for awhile

  • I have had an ultrasound then the needle biopsy and lots of blood work in between and after...

    Yes--officially diagnosed after the AMA blood work done

    I've had this for 20years and all the symptoms but could explain them away...

    Had yearly physical last Jan & LFT's normal had it this year and LFT's were thru the roof at 1700...my GP sent me to my Specialist at Georgetown...

  • Was it only your alp that was elevated or was all of them elevated?

    I am so angry at how many women that have this disease had symptoms and elevated enzymes or their dr didn't know what it means to have elevated enzymes, what really gets to me the most is the look that is given when trying to explain my liver disease. They look at me like they smell 💩. But yes you can get the information down. How old are you

  • My numbers were fine last year but the LFT's this year were elevated...my GP tried to trick me into admitting I drank a lot...🙄🙄. This guy was new to me and he really pissed me off, I was in the process of moving from Arlington Va near D.C. to Sterling Va and thought about ignoring him but something nagged at me to go to the Specialist...

    I just turned 50 in December, took my last college exam the same day and was in DC doing my internship...

    The TV commercials on Hep C I think is what got to me...I am in that age range and when I looked up the symptoms they were some of the ones I had experienced.

    So, I saw my liver doc and she interviewed me..asked a lot of questions about my symptoms AND family history. We have pretty much concluded this is what my grandmother and possibly her mother died from...

    Anyways, she told me what she thought it was, explained the disease to me and told me to be sure I had to have extensive blood work done.

    I did and two weeks later we had the disgnoses. She then told me that she wanted the biopsy to find the depth of the damage. I told her I was graduating May 6th and did not want to do or know that until AFTER my graduation. She agreed and started me on Urso... and here we are...lol. All this started in January with the physical., the one the House Republicans want to take away from our health care coverage. 😠😠

  • God Help us ALL in the USA if the House Republicans STRIP our Health Care Coverage... my husband had cancer prior to The Affirdable Care Act and we went broke, lost the house and car paying for his treatments. We went over the $250,000 limit. Then his employer dropped his coverage and all Hell broke lose...it was a free fall. He wouldn't take treatment because of the bills, and it was not good.

    when it was over I still had to sell any and everything just to pay off the hospital, labs and medicine. His doctor wrote his bill off and I still feel guilty over that.

  • I'm 53 years old and found out the way that you did. I read that the biopsy can vary depending on where the biopsy is done but I'm not sure if that's accurate.Did I read that you have no symptoms

  • I had symptoms, there were a lot of them but I could explain them all.

    Dry Mouth--I was taking Claritin which causes that

    Sides were sore--I was sleeping on an air mattress for 8 months

    Hot flashes---well, I'm at that age

    Fatigue--working 32hrs week in a pharmacy while working 40 hrs on an internship of course I'm tired!!! Lol

    Brain Fog---again full time studen & turning 50...😝😝 brain was always in a fog! I thought it just cause I was getting older..lol

  • Those symptoms could be menapause and or both. I rarely took a Tylenol. 3 years ago I tore my rotator cuff and it took a year a severe pain and worry becaus the dr said it was my neck. Finally I switched doctors and got him to give me a MRI of my shoulderHad the surgery and went through the year of physical therapy. I took very little pain medication. But I sure was prescribed it. I blamed menapause as well. It is what it is. Women have it ruff. If I was you I would keep living and follow yur plan. The aih medication has a hold of me for now but when I was only prescribed Urso I was fine.

  • I'm 50 also. Used to be very active. 15 years ago. Working 40hrs at Drs office pt in a retail store head of my house. Divorced, 2 kids soccer coach house was always perfect.

    Thru the years I've been fatigued, confused, pain, itchy rashes, loss of appetite. But Drs could never give me a clear diagnose.

    Last 4years. Working at a convenient store, (which my ability to work long hours or even full weeks have gone down)

    Hysterectomy, thyroid removed, gallbladder removed... liver enzymes elevated, ultrasound says enlarged liver. GI Dr told me it was my osteoarthritis causing it. Bloodwork again in 6mo.

    I get 2nd opinion at a liver disease center... PBC that was almost month ago.

    Can't believe Drs don't connect it to PBC .. as if most don't even k ow what it is..

    Sorry so long winded

  • Thanks for sharing your story...it could have been mine...I never thought twice about any of my symptoms as they all made sense for my life at the time...which is why mine has progressed so far...

    But I'm optimistic about my future now. I feel as long as the URSO works I can do my part and get this thing under control!

    I'm not cirrhoritic so damage is bad but not irreversible...THANK GOD it's the liver, the only organ that can regenerate itself! 😀

  • The biopsy thing makes sense to me. I have a strong medical background ironically... never heard of this disease tho...they took a core of 1.1cm sample and showed up to 11 portal tracks. They showed moderate to severe chronic inflammation with ductitis and duct damage. Further staining of tissue showed loss of bile duct branches in numerous tracts.

  • That is some serious damage and if it were all over the liver I wouldn't be here right now...lol.

  • Not sure you can see this but she gave it to me to help understand...Hummm

    How can we download a picture??!!!

  • I believe you have to make a new post

  • Ok, just made a new one coming it out

  • Ok, I took it down till I can talk to my Dr. it looked pretty straight forward with everything I had researched and in all honesty it never scared me. I'm a nuts and bolts kinda person, have to know how things tic and do what they do. In that I find comfort...however until I get some answers to some good questions that were raised it's down...no need to scare anyone whose mind does not tic the way mine does! I'll keep you posted...

  • We are all like that. You didn't have to take it down. I thought that you were going to post an image of your scan. My Dr told me to avoid alcohol, salt, sugar and transfat. Processed food is bad as well. He demanded that I don't take herbal supplements and vitamins.

  • Hi Jenny, congratulations on your progress on the PBC. It is fantastic.

    Which doctor do you see at Mayo clinic? The he/she do MRE for you?

    I am considering going to Mayo for MRE. Below is the excerpt from a article I read:

    #####

    Researchers at The Mayo Clinic have invented a diagnostic imaging test which is able to detect very early stages of liver disease. It is called Magnetic Resonance Elastography or MRE and it is now being used at Mayo Clinic for patients who are at risk for liver diseases. MRE measures the elasticity of the liver and can detect abnormal hardening or stiffness of liver tissue – in a way you could say that MRE allows doctors to “feel” the liver by imaging it. Scar tissue is very fibrous and makes the liver hard whilst healthy liver tissue is elastic and makes the liver soft and MRE can easily detect the difference.

    MRE is extremely accurate – its sensitivity for diagnosing liver fibrosis is 98 percent and its specificity level (absence of false positives) is 99 percent.

    The MRE (“liver elastogram”) provides color images of the liver that look amazing! To see pictures of liver elastograms visit mayoclinic.org/magnetic-res...

    The wonderful thing about MRE is that it can spare some patients the need for a liver biopsy. Such early and accurate diagnosis of liver disease allows doctors to initiate early and specific treatment before it progresses to cause irreversible damage.

    Damage to liver cells by fat, toxins or infections etc, causes inflammation, which can lead to hard scar tissue or fibrosis. A liver that has developed widespread fibrosis is firmer, and if the condition progresses to cirrhosis, the liver can become almost rock-hard. The vital thing is, if detected early, fibrosis of the liver can in many cases be reversed. If the scar tissue progresses to widespread cirrhosis, the condition is usually irreversible.

    #####

    Thanks,

    Jane

  • I'm going to ask him about this. I doubt that he will do anymore imaging for me. He believes I'm to early on. That really frustrates me but I will know more Friday. I'm getting a lot of liver pain

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