You want to get a good explanation of PBC and what parts of your body it affects. Since symptoms like fatigue and itching may seem vague, you may not naturally link them to your liver. But the better the description of the condition you get at the start, the better you can prepare for your future.

PBC is a relatively rare condition, and not all liver and digestive specialists are familiar with it. You want to make sure that your doctor is familiar with the disease and is up-to-date on the latest treatments and research.

There aren't medications that cure the condition, but there are treatments to slow its progression. The most common one is ursodeoxycholic acid, or UDCA, which helps to clear bile from your liver and prevents liver damage. About half of people get help from it. If you don't, there are other medications you can try. There are also drugs like antihistamines that relieve symptoms such as itching.

You'll want to know how often you'll need lab work or imaging. Right now, the standard of care is to do liver function tests every three to six months and check other markers like thyroid stimulating hormone and vitamins A, D, and E once a year. They may also recommend liver imaging tests like FibroScan.

There may be specific things your doctor recommends, like reducing sodium and fat intake.

Most over-the-counter and prescription medications are safe, but there are some specific ones your doctor may recommend that you avoid, like ibuprofen.

Many people with PBC have crippling symptoms like intense itching and extreme fatigue. It's important for your doctor to know, so they can help you come up with strategies to improve them. Some people even end up on disability because they can't stay awake throughout the day.

Your doctor will want to know how your PBC affects you on a daily basis. Some people with the condition end up on disability because they are too exhausted to work. If you're wiped out cooking dinner, let your doctor know. They will want a good baseline of how well you function when you are first diagnosed, to get a sense of whether your treatment is helping.

If you regularly take ibuprofen for headaches, for example, your doctor may recommend that you switch to Tylenol to place less stress on your liver.

If you have PBC, you'll need help to get through your day. When I was diagnosed, for example, I couldn't drive an hour without stopping for a half-hour nap. You'll want to have someone around to make sure that you eat and drink regularly. You'll also probably need help doing daily household chores. If you don't have support, your insurance may cover the cost of a home health aide. Your doctor can connect you with a social worker to help you check.

Oftentimes, work needs to be tailored. You may not be able to work a 12-hour shift, for example, or you may need breaks from standing. Your doctor can provide documentation that you can give to your employer to request changes.