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“I’ve been experiencing some brain fog and read that it can be a symptom of PBC. Has anyone else experienced brain fog with PBC?” one myPBCteam member asked. There are many similar threads about brain fog in the myPBCteam community. Another member asked, “What helps with brain fog?” Others have wondered what vitamins or supplements people have used to fight brain fog.
Brain fog — sometimes called mental fog — can be difficult to manage regardless of why you’re experiencing it. It’s an umbrella term that describes symptoms that make it hard to think, focus, and remember. Among people living with primary biliary cholangitis (PBC), brain fog is a common topic of discussion.
Here’s a deeper look at what brain fog is, whether PBC can cause it, and some tips to help you manage it.
Brain fog is a broad term for symptoms resulting in cognitive impairment or mental deficits. It’s used to describe symptoms that negatively impact thought processes, such as attention and memory. Symptoms can vary from person to person, but generally, brain fog can make you feel like you’re:
Symptoms of brain fog are generally temporary. However, how long you experience brain fog can depend on its cause.
People with brain fog may find that daily activities become more difficult and their quality of life worsens. Dealing with brain fog can cause feelings of anxiety, frustration, and helplessness.
So, what does brain fog feel like in people living with PBC?
One member explained, “I can be talking to friends and have to stop suddenly as I forget simple words. I was chatting to my husband this morning and forgot the word ‘targeting.’ So annoying and makes you feel so silly at times.” Another commented, “It’s embarrassing when you’re in mid-conversation, and you get tongue-tied, and it looks like you don’t know what you’re talking about.”
Other members have worried about declines in their long-term memory. “I don’t remember significant life events, things you definitely would remember. I recently started a new job, and I’m having trouble remembering all of the steps I’m supposed to take in doing my job,” one myPBCteam member explained.
Another member commented on how they worry their brain fog will negatively impact others’ well-being: “Brain fog is getting ridiculous, and that scares me when it comes to giving my husband his daily meds. I am his caregiver and have come very close to giving him the wrong meds on more than one occasion.”
What causes brain fog in people with PBC? Several myPBCteam members have questioned if PBC causes brain fog, while others have wondered if they might be mistaking brain fog for something else.
“This is really frustrating for me. I’ve never experienced this to such a degree. I question if it’s brain fog or something worse creeping in,” a member shared. Another commented, “I have been having so much brain fog!! I am assuming it is PBC. But starting to think I have the beginning of Alzheimer’s.” Another member shed some light on the subject: “Oh yes, I have it bad. I was thinking it was early dementia. Went to my neurologist, and he said it’s the PBC causing it.”
There are many possible causes of brain fog, including autoimmune diseases. PBC — formerly called primary biliary cirrhosis — is an autoimmune condition that affects the liver. In PBC, the immune system attacks healthy cells in the bile ducts, causing liver damage. It’s considered a cholestatic liver disease — cholestasis being the term for impaired bile flow.
Fatigue and cognitive issues, such as brain fog, are common symptoms of PBC that often occur together. Among people with PBC, 30 percent to 50 percent reported fatigue and/or cognitive issues. Having these symptoms is linked to a worse quality of life. This is especially true in people whose concentration and memory have been affected.
Studies have linked fatigue and problems with thinking and memory to changes in the brain and the nervous system. In some people, these are early-stage changes that appear as early as six months after a PBC diagnosis. How exactly PBC causes brain fog isn’t well understood. Experts think that a certain kind of fatigue (central fatigue) may lead to brain fog because it affects the central nervous system.
Neurosteroids — chemicals made in the brain that help to regulate brain function — have already been linked to neurological conditions like Alzheimer’s. Neurosteroids impact receptors in the brain. GABA-A receptors help to calm down brain activity. When certain neurosteroids are out of balance, it can result in memory problems, fatigue, poor sleep, and mood disorders. In particular, high levels of allopregnanolone have been found in people with PBC who have severe cognitive issues.
Cognitive dysfunction can also be a complication of late-stage PBC. Hepatic encephalopathy can occur in people with advanced PBC and cirrhosis. This complication can cause problems with memory and concentration, as well as personality changes. One member shared, “My brain fog continues to get worse. However, I have cirrhosis now. Years ago, I was on Urso, but (no pun) I cannot remember why I stopped.”
Brain fog may also be a side effect of some medications. Members of myPBCteam have shared how they’ve had brain fog as a result of taking certain drugs. “Now on a new medication… Absolutely no itching!! Other side effects (muscle aches, brain fog, and everything dry), but the itching totally gone,” one shared.
Several myPBCteam members have looked to their community for help managing brain fog. One asked, “What do you do to ease the symptoms of your brain fog? It makes me feel unhinged!” Though there’s no specific treatment for brain fog, there are some things you can try to better manage your symptoms.
If you’re living with PBC, your healthcare provider may recommend medications to improve your liver function. These drugs can help prevent complications and slow disease progression. They may help you better manage PBC symptoms, such as brain fog and itchy skin.
Your doctor may suggest other medications, such as antidepressants or nonsteroidal anti-inflammatory drugs, to help with brain fog.
You can also try lifestyle changes to see if they improve your symptoms. Certain adjustments may help brain fog as they support a strong immune system, including:
To manage your brain fog, consider engaging in activities that stimulate your brain. For instance, things like puzzles, learning new skills, and reading all exercise your brain. Exercising your brain regularly might help improve your symptoms. Participating in social activities is another way to stimulate your brain as you’re interacting with others.
Brain fog symptoms can last anywhere from a few days to years. It’s important to talk to your healthcare provider if you’re experiencing brain fog, especially if it affects your quality of life. You and your doctor can work together to find the right treatment.
On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.
Do you have brain fog with PBC? What specific issues have you noticed? Do you have any tips for managing brain fog? Share your experience in the comment below, or start a conversation by posting on your Activities page.
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