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Home > 2017 PBC Chat Summary

2017 #PBCChat Summary

Chances are, if you've recently been diagnosed with Primary Biliary Cholangitis (PBC)- or know someone who has, you probably have questions about the disease.

With that in mind, we hosted a Tweetchat on February 8th, 2017 with PBCers Organization about general questions about PBC, including diagnosis, maintenance, treatments, and nutrition and wellness.

To answer the questions, we invited Dr. Kenneth O'Riordan- a Gastroenterologist and Hepatologist from Advocate Healthcare in Illinois to join us for the chat. We also devoted the last 15 minutes or so to questions from the audience. The conversation was well attended, with numerous health organizations, patients and caregivers participating, asking questions, and sharing the information with the liver community! Meet Dr. O'Riordan here, and make sure you read the transcript from the conversation, which we've posted below!

ALF / PBCers Tweetchat February 8, 2017

General Questions

Q.1 Do you find that fatigue is worse in PBC than other liver diseases. If so, why?

A1. Fatigue can be worse in PBC compared to other liver diseases and it's not known why this is but this can be debilitating

Q 2. Any insight about the itching – possible cause, why worse for some than others, and what treatments do you recommend?

A 2. Itching may be secondary to deposition of bile salts or possibly from alteration of pain receptors in the skin. Itching may be from bile salt deposition or change in skin pain receptors. Treatment options are actigall, questran and Zofran mainly.

Q 3. We are finding an increase in patients joining our support group – are more people being dx? Why?

A 3. Diagnosis greater now with primary MDs evaluation asymptomatic patients with an elevation in their alkaline phosphatase level and AMA testing. Also increased diagnosis with increased public awareness.

Q 4. Is transplant always the outcome of PBC?

A 4. Transplant only needed in a minority of PBC patients and less so over the last 15-20 years with newer therapies

Q 5. If my doctor hasn’t treated any other PBC patients should I seek out a specialist whom has experience with this population?

A 5. Always good to get a second opinion from someone who treats more patients with PBC as most primary MDs only see a few patients.

Q 6. Can PBC be inherited by my children if I want to start a family>

A 6. PBC can be transmitted to your children although the risk is small and should not prevent someone starting a family.

PBC diagnosis questions

Q 7. Is it possible to be misdiagnosed for PBC with other autoimmune conditions such as lupus or AIH?

A 7. Misdiagnosis can occur as overlap syndromes with autoimmune disease can occur and cause some confusion in the diagnosis.

Q 8. How often do PBC patients need their labs drawn? How often do PBC patients need imaging scans done?

A 8. I would recommend labs every 6 months in stable patients and more frequently if cirrhosis and complications--Ultrasounds if cirrhosis

Q 9. Does having PBC put me at risk for developing liver cancer? Are there tests my physician can order to monitor this?

A 9. Higher risk of liver cancer once cirrhosis develops although may be less than in other liver diseases

Q 10. Is liver biopsy still the golden standard for diagnosing PBC?

A 10. Liver Biopsy is still the gold standard for staging the disease.

Q 11. Should PBC patients get vaccinations against Hepatitis A & B?

A 11. All patients with chronic liver disease need to be vaccinated against both A and B Q 12. Is it possible to have PBC and still have normal liver function tests? Is there a key indicator my dr. should be looking at?

A 12. Most patients seen now have normal or only slightly elevated LFTs and may have milder disease on liver biopsy

Q 13. Should I ask my doctor to order a bone density scan since PBC patients can get osteoporosis?

A 13. A DEXA should be ordered on all patients with PBC irrespective of the presence of cirrhosis

Q 14. Is transplant always the outcome for PBC patients?

A 14. Liver transplant is only needed in a minority of patients with PBC

Diet & Nutrition Questions

Q 15. Since PBC patients are deficient in vitamins, are there specific vitamins which are OK to take?

A 15. It's OK for patients to take a multivitamin and especially to take extra calcium and Vitamin D

Q 16. Many patients inquire about diet changes to make - what do you recommend? Do you think gluten free is something to look at?

A 16. Healthy cardiac diet the best and testing for celiac disease often helpful in PBC patients

Q 17. What kinds of foods should I be including in my diet? Is the DASH diet the best one to follow?

A 17. DASH diet may be helpful for diet in general and also beneficial for patients with PBC

Q 18. Would you recommend a patient with PBC to take milk thistle?

A 18. Milk thistle is OK although little data in patients with PBC

Q 19. How reliable is AMA testing?

A 19. AMA + in 90% of patients--degree of elevation does not correlate with liver disease severity. Biopsy helpful

Great information. Moving on, we've got a couple questions about treatment and medications. Q 20. Many in PBCers group feel they have side effects from urso - how do you distinguish if they are from the disease or medication?

A 20. Unknown if side effects are from meds or the disease--best option is to stop med and follow symptoms

Q 21. Finally, how much better is taking Ocaliva with Urso rather than just Urso alone?

A 21. Ocaliva may be beneficial in patients who do not respond or are intolerant of URSO. Ocaliva is beneficial with URSO in patients whose ALP does not not normalize with URSO or who have side effects form URSO and important to start at low dose and increase gradually to prevent itching.


Q 22. If PBC runs in families what should I be doing for my daughters who are in their teens now?

A 22. Have them see their primary MD for measurement of ALP levels.

Q 23. What demographics are more likely to have PBC?

A 23. Varied demographics--seen in mostly Caucasian patients

Q 24. What OTC medications are contraindicated for PBC sufferers?

A 24. All patients with liver disease should be careful with Tylenol and anti-inflammatories and not take more than 3-4 in a day

Thanks so much to @pbcers & @KorgimdORiordan for a great #PBCchat!

Page updated: May 4th, 2017


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