Extreme Fatigue with PBC

Hi @michellesauer
Your fatigue has to be difficult, affecting everything you do and definitely a good idea to figure out what is causing it. It takes so much effort and makes it really difficult to do much else. I am not familiar with PBC, nor Ursodiol but do experience fatigue. Mine comes and goes. It can be absolutely exhausting. You are extremely strong to deal with it and taking a step in a positive direction to write this post.

Here are links I found that you may find helpful:
- a summary of PBC (Primary Biliary Cholangitis). It does look like this autoimmune has to do with the liver and fatigue can be a symptom. The treatment section states that ursodiol (Actigall, Urso) is commonly used first and helps move bile through your liver. Also, it is not likely to help with itching and fatigue. I think you are on to something worth asking your doctor about, especially since there may be other treatment options. https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis/symptoms-causes/syc-20376874
- Liver support group: https://connect.mayoclinic.org/discussion/liver-diseases-group-lets-connect/
- PBC lifestyle tips: https://mcpress.mayoclinic.org/living-well/primary-biliary-cholangitis-lifestyle-dos-and-donts/?utm_source=bing_search&utm_medium=cpc&utm_campaign=mc_cs_ag_1231454087879702&utm_content=mc_cs_cid_76966013506196&msclkid=582a73f9cadb129bdf341bcfd8bf5ede

What were your symptoms that led to your PBC diagnosis 8 years ago? Is it the same doctor that diagnosed it that is prescribing your Ursodiol currently?

I didn’t have any symptoms when I was diagnosed. I just had irregular labs. I went to a liver specialist and he ran a lot of blood tests and ruled out everything possible but decided to do a liver biopsy because he suspected PBC. He left the practice soon after and I went through a couple different doctors there. Then I moved out to the middle of nowhere basically about four years ago, and now I don’t even have a liver specialist. My primary care doctor prescribes my Ursodiol.

Oh, no @michellesauer, it definitely sounds like connecting in the liver support group will help.

I am looping in @rosemarya who may have more information for you.

Are you comfortable continuing to work with your primary care doctor, or maybe it’s time to connect to a new liver doc?

I would like to connect with a new liver doctor, but one that knows enough about this disease to take it seriously. My experience has been that other than the first doctor, the others made it seem like it was no big deal and dismissed my fatigue. It was frustrating so I quit going. Now there are no doctors within 3 hours drive. So, they would have to be a good doctor worth seeing. I’m in SW Kansas. Maybe someone in Denver? But that’s 5 hours away. It would be an overnight trip. Maybe one that does virtual visits?

Also, I know that even with the medicine the disease progresses although slower. But I had one doctor who acted like the medicine was a cure. I was diagnosed 8 years ago. I’d really like to know where we are now in the progression.

Hi, @michellesauer. I had a liver disease, PSC (Primary Sclerosing Cholangitis), also a disease of the bile ducts. My PCP referred me to a gastroenterologist (GI) at the very beginning when he saw my abnormal labs. PSC is a progressive disease and also was prescribed URSO. My GI took charge of my liver care because he had the knowledge and experience that my PCP not studied. I had labs drawn every 3 months and routine check-ups with him for 8+ years before my symptoms developed. When I began to experience mild tiredness/fatigue, he told me that fatigue is a common symptom of any liver disease. However eventually my my fatigue became worse, my liver function labs increased; and other liver symptoms developed (jaundice, fluid rentention, itching). At that point I was referred for a transplant - which had always been on the radar due to my particular disease.

Every one's liver disease will demonstrate similar - and - different symptoms. Some patients with PBC do advance to transplant. The only way for you to know what is going on with your liver is going to be to connect with a liver specialist. I want to urge you to contact the medical center that you mentioned talk to someone in the liver or gastroenterology dept for a referral or an appointment. You deserve to know what is happening and whether there is need for further investigation or treatment.

Does this sound like something you can do?

Hi Rosemary, Thank you for reaching out. I need to do some research to find a doctor but yes, I will do that.

@michellesauer , I am a good days drive to Mayo Clinic in MN and figured out I could find out more new, concrete information from a trip there than I could accomplish otherwise. It is a shift in your mindset, more of a long term approach. Knowing you are confident to figure out how your liver is doing, it may be worth considering how they can help. You could ask your primary care to refer you or you can contact them yourself. Either way, they are on the leading edge of research and care. A lot to consider.

Here is some information to get you started on your search. I don’t see anywhere in Denver listed. Maybe there is an academic medical center there that is not on this list.
- best hospital rankings: https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
- for a Mayo appointment: https://mayocl.in/1mtmR63

When do you see your primary care doctor next? A thought…your first liver doctor sounds like they understand what is happening with you and would have your records. Would it be worth a call to them to see how they could help you find care?

Thank you, Janelle for sharing your story. I have reached out to the Mayo Clinic to schedule an appointment in Scottsdale. I appreciate the encouragement to move forward with this.

Hi @michellesauer,

I also have PBC. I was diagnosed in 2008 the exact same way that you were and have been on Urso ever since. I’ve been fortunate to have a doctor that is not just extremely knowledgeable but also one who travels to regularly give talks on this autoimmune disease and has even been on the board of a few medical companies trying to help create better medications as more is learned about this (though not one single thing is pushed or forced, he always asks me questions and my own opinions about my treatment). I only say this because my gastroenterologist can do virtual visits. I’m in Virginia Beach, VA. I don’t know if it’s ok to share specifics here, but if it’s allowed and/or you want to reach out to me somehow (sorry, I’m still new at all of these forums) I would love to share.
The main issue, that I am certain of, is that our mitochondria are attacked - these are the powerhouses and main energy stores in our cells. Hence our major fatigue. Actually, in 2021 I was also diagnosed with hypermobile Ehlers-Danlos Syndrome, h(EDS). One of the most common side effects is also chronic fatigue. So for several years I’ve been trying to learn more about pacing and trying to better manage this crazy body of mine.
I’m glad we’ve found one another and hope it helps you in some small way at least to know that you’re not alone. Take Care!