Extreme Fatigue with PBC. Anyone else have 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!

Hi aeiou13,
Thank you so much for reaching out. It is so good to connect with someone with a similar story. I would like to know about your doctor to see if I could reach out to him and get an appointment. He sounds like a top notch guy. Can you tell me are your labs normal? I had read that with the Urso your labs will probably remain normal, but that does not mean that the disease is not progressing. It just means that the bile is able to leave the liver because it has been thinned down. Do you know if that’s correct? I’m also curious if people are able to get liver biopsies as staging tools at various times throughout their illness or if they just have to wait until they get the symptoms of liver failure to know where they are. These may be questions for the doctor, but I just thought I’d see if you had any information on this. Thank you so much for whatever you can offer.

My alkaline phosphatase was the main culprit - my highest that I can recall was around 260-something. I’ve also had a positive test for anti-mitochondrial antibodies, and the combination is like putting PBC in lights (my words, haha). The Urso does help that alk phos number decrease, but my doctor said that the newest guidelines are for that number to be under 100 and I just don’t get there. I’m also taking fenofibrate to help, though I personally can’t remember how. He’s attempted to have me take different, more recently approved medications, but my insurance always denies it.
As far as doing other tests for staging, I’ve had ultrasounds and other types of bloodwork done - haven’t had a biopsy since that first one in 2008.
I just would like to add, for anyone else who may read this, that I know that not everyone likes the same things or people, but I can only speak about my own positive experiences with such a confusing diagnosis and just hope that a recommendation may help someone else, too. Even if it leads down a path where someone might be able to find more information or discover more answers, that’s why I’m sharing my doctor’s information.

Dr. Michael J. Ryan, MD
Capital Digestive Care
I’ve included a couple of links. Always worth reaching out to him. Hope this helps!
https://www.capitaldigestivecare.com/doctors-providers/michael-ryan/
https://connect.medicalnewstoday.com/provider/dr-michael-ryan-1962488668

Hi @michellesauer. I am checking in to see how you are doing. I hope you have gotten comfortable navigating Connect and found discussion that are helping you in your journey.

How are you feeling? Have you been able to meet with a liver specialist for an evaluation and to see if Ursodiol is still the best treatment for you?

Hi Janell, thank you for checking in. I’m on hold right now as I wait for my records to be sent to Scottsdale.

I wondered if you were able to connect with Dr. Ryan. If not, I’m sorry. If there’s anything you want to talk about, let me know. Having invisible autoimmune and incurable syndromes/diseases can be stressful and oftentimes confusing. I truly hope that you find a doctor that will help you get more relief. 🙂

Hi, actually, I went on their website and submitted a form to have someone call me about making an appointment and no one got back to me so I pursued the Mayo Clinic in Scottsdale. But thank you so much for reaching out.

I'm right there with you! Plus I have stage 4 cirrhosis. ..that definitely doesn't help my situation AT ALL! I end up taking mini naps. A moment outside helps me feel like I'm not hibernating.