My story

[Pamela4475]

I haven’t been on in awhile but wanted to update everyone. My liver specialist from the liver institute Methodist hospital told me this morning was our last visit unless I needed him again. I retired from ER nursing in 2017 bc I was diagnosed with pbc and possibly nrh according to the pathology report from liver biopsy, I also had high liver enzymes and itching and an on and off troublesome bilirubin. I was on urso meds 3 x a day for about 3-4 years with labs improving since the meds started an an appropriate diet. I adhered to it strictly. I found my new liver specialist when I planned to move off my beloved Galveston island to Amarillo Texas to be near family if I got sicker and my wonderful new doc had a satellite clinic that was here every few months. He had my original slide and the report sent to him and he had a liver pathologist read the slide and report. He told me Methodist hosp liver pathology dept found no sign of pbc or nrh and I could stop the meds and we would see how it goes, I forgot to mention my ama2 blood test went up while I Galveston to positive and climbing. I hesitated to stop the urso since things had gone well and it took many prayers and effort to get normal labs. I was still on Lipitor but the bone pain and right upper quadrant pain was so painful and I could barely have it touched by clothes. After a month more I trusted my new doc and came off urso with a negative ama. That was 2 years ago. Since then I have had labs every six months and all were normal with a ama2 every year that remained negative. My pain disappeared when changed from Lipitor to Crestor or Rosuvastatin. My specialist thinks everything was due to Lipitor damage and my ultrasound last month showed a little fat on my liver and told to lose 10 pounds.this is not meant to sway anyone into thinking this could be your issue and I had everything pointing to pbc except the biopsy report that was read by a resident and no faculty signed off on it. I feel your pain and anxiety and know what your thoughts are…. Just be aware it’s not a bad thing to sometimes get another opinion that is not in anyway connected to the other md…. Different hosp and different town. All of you remain in my prayers 🙏🏻🙏🏻 and this group is a beacon of support… thank you and God watch over us all, Pam

[4pjx__]

I am very happy for you! It must be such relief! --Pam

[Pamela4475 in reply to 4pjx__]

Keep in touch

[Pamela4475 in reply to 4pjx__]

Very much so

[ninjagirlwebb]

Happy for you!!! Stay well and be safe!

[Pamela4475 in reply to ninjagirlwebb]

Ty dear

[butterflyEi]

How wonderful fo r you, stay well.

[Lu11]

Definitely! My primary doctor did not run ANA/AMA when it was obvious I was having autoimmune issues and my Mom died from PBC! I asked her to run the tests and found a functional doctor to get a second opinion. That’s when I got answers. Thank you for the reminder, I’m so happy for you! 💓

[Pamela4475 in reply to Lu11]

Thank you and bless you. We know our bodies even if we don’t know exactly what’s happening so trust yourself and find someone really interested in protecting your health ❤️

[Bungarose in reply to Lu11]

My Mother died from PBC and her consultant advised me to get checked, my GP did LFT which came back slightly elevated, I also had a liver scan which showed I have a few cysts on my liver and suffer from fatty liver disease. I am not overweight, I have upper right quadrant pain most days and am always tired but he says I don't have PBC. I have also been diagnosed with Adies Tonic Pupil which is damage caused to the pupil when one has suffered a virus at some point in time and is thought to be an auto immunity reaction. I don't feel my GP even really understands PBC !

[Lu11 in reply to Bungarose]

It’s amazing how clueless and dismissive they are! Even the gastroenterologist was awful! I consider myself to have PBC even if they don’t officially diagnose me. I am ANA/AMA M2 positive and have symptoms even though my enzymes are “within normal limits”. I also have other autoimmune issues (RA and thyroid) I decided to wait a few months a test again to see how the enzymes are doing. We know our bodies and if your Mom died from it, you know more than the average PBC patient! I may not be as sick as my Mom was, at my age, but I definitely have it! Have you seen a hepatologist or gastro? I know how you feel, but always trust what your body tells you!

[gwillistexas]

I’m happy to see your post. I’ve been wondering if you had seen Dr Mantry recently. I’m considering seeing him again. I like my hep but there’s something about Mantry that keeps pulling me back in his direction. So glad you’re doing well. I’ll be talking to you soon. 😊

[Pamela4475 in reply to gwillistexas]

He is my angel… he personally had top liver pathology look at the slide instead of report..I love him and he said he would be there if ever needed in the future

[gwillistexas in reply to Pamela4475]

I have been increased to 10 mg Ocaliva due to increase in Alk Phos. Have had a little issue with it but they say my body will adjust. They checked LFT’s last week because I was feeling off. All was stable. I’m not sure what I will do as far as staying with Mubarak or going back to Mantry. But Mubarak is here every Friday and I like that. Good to hear from you!

[Pamela4475 in reply to gwillistexas]

You two my sweet friend

[Ballymahon2]

I am happy for you.i have been on urso for 5 yrs and so far so good i am a responder

[Pamela4475 in reply to Ballymahon2]

I was too so keep up

The good work

[21parker]

Wow! a congratulations such wonderful news. All the best to you!!!!!

[Pamela4475 in reply to 21parker]

You too dear

[Jlruggie]

Pamela, Thanks for sharing your good news. This is the FIRST time in the 20+ years since I’ve been diagnosed that someone with PBC has tested negative for anti mitochondrial antibody and can stop taking Ursodoil meds! What did you DO to stop it???

[Pamela4475 in reply to Jlruggie]

I stopped Lipitor or simvastatin and started Crestor or rosuvastatin, it is a second generation statin so does not have the liver damage that everyone is suing for. Once the toxin was taken out (even my liver doc said to stay on it in Galveston) things turned for me. I had all the symptoms and lab results you would expect with pbc including the itching and higher bilirubin so I don’t blame anyone but it was my internal medicine doctor that took me off of Lipitor and put me in Crestor and I continued my liver diet and exercise that we have all been told to do… best wishes to yo with prayers, Pam

[LorraineLouise]

PamelaSo very happy for your great news. Love hearing positive things

Many Blessings!!!

Lorraine Louise

[Pamela4475 in reply to LorraineLouise]

🙏🏻🙏🏻🙏🏻🙏🏻

[Pamela4475 in reply to Pamela4475]

Thank you