Have you been diagnosed with Primary Biliary Cholangitis ( PBC ) , or as doctors call it? If so, you've probably already started treatment. But do you sometimes feel like the medications you're taking aren't helping as much as you think, and that the disease is just the way it is? It's normal to feel that way, and don't worry about it. Today, we'll talk about what happens if your PBC treatment isn't working, how to recognize it, and what to do next.
First of all, what is PBC in simple terms?
Think of our liver as one of the biggest factories in our body. An important fluid produced in this factory is called 'bile'. This bile helps us digest the food we eat. This bile is carried out from the liver through a very delicate system of small tubes ( bile ducts ).
In a condition called PBC, a defect in our own immune system attacks these delicate bile ducts and causes them to swell from the inside. It's like a water pipe getting clogged. Then, bile can't flow properly and starts to accumulate inside the liver.
In the early stages, there may be no symptoms. But as this bile builds up over time, it damages the liver cells and causes scarring. When this condition becomes severe, it is called cirrhosis . If not treated properly, it can even lead to liver failure . That is why it is very important to start treatment as soon as possible.
The first medicine the doctor gives - UDCA
Once you're diagnosed with PBC, the first medication your doctor will usually start you on is Ursodeoxycholic acid . Since it's hard to remember the long name, we all call it UDCA for short.
What this UDCA medicine does is help the bile that has accumulated in the liver to flow out more easily. This reduces damage to the liver. But there is one important thing we all need to understand.
This UDCA medicine cannot completely cure PBC. However, it can stop the disease from progressing rapidly, control the damage to the liver, and help you live a normal life.
But the problem is, this medicine doesn't work the same for everyone. Some people don't get the results they expect from it.
How do you know if the medicine is not working?
Studies have found that about 40% of people taking UDCA, or about four out of ten people, do not get the expected benefits from the drug. A small number of people experience side effects such as stomach upset and diarrhea, making it difficult to continue using the drug.
If your treatment isn't working properly, you may continue to have or get worse symptoms like these.
| Symptom | How it feels |
|---|---|
| Constant feeling of extreme fatigue | Feeling lifeless even after sleeping well and doing nothing. |
| Scratching the skin | Unbearable itching all over the body, especially at night. |
| Yellowing of the skin and eyes | The whites of the eyes and skin turn yellow, as in jaundice. |
| Dry eyes and mouth | A constant dry mouth and a feeling of dryness, like sand in the eyes. |
| Pain in the upper right side of the abdomen | A dull pain coming from the liver area, that is, on the right side of the abdomen, under the ribs. |
| Swelling of the limbs and abdomen | Especially swelling in the legs, ankles, and then the stomach area. |
Who is more likely to not take UDCA?
Doctors have observed that some people may experience reduced results from UDCA. These include:
- People who already have cirrhosis of the liver.
- People with very high levels of liver enzymes called gamma-glutamyl transferase and alkaline phosphatase in their blood.
- Males (although PBC is more common in women, it can be more severe in men).
- Women diagnosed with PBC before the age of 45.
How can you confirm this, doctor?
Even if your symptoms persist, the doctor won't immediately decide that "the medicine isn't working." There is a way to know for sure.
Once you start treatment, your doctor will monitor you regularly. They will usually order blood tests every 3 to 6 months. But it can sometimes take up to a year to tell for sure whether this medicine is really working for you.
These blood tests mainly look at your liver enzyme levels, specifically Alkaline Phosphatase (ALP) and Bilirubin . If these levels are still significantly higher than normal after several months of taking UDCA, it could be a sign that the treatment is not working as expected.
If that happens, your doctor may decide to add a new medication to your UDCA or talk to you about another treatment option.
So what should I do?
This is the most important thing you need to know from this article.
Talking completely openly and honestly with your doctor.
If your symptoms don't improve or seem to be getting worse, be sure to mention it to your doctor the next time you see him. Don't hide information, thinking, "This must be normal," or thinking it will bother the doctor. Every little thing you feel is important when making treatment decisions.
Remember, just because the first medication didn't work doesn't mean it's all over. Medicine has advanced a lot. There are more options and new medications to help manage your condition. The most important thing is that you and your doctor work as a team.
Take-Home Message
- PBC is a disease that damages the fine tubes that carry bile to the liver. If not treated properly, it can lead to serious liver damage over time.
- UDCA is the main and first-line treatment for PBC, but it does not work equally well for everyone.
- If symptoms such as frequent fatigue, itchy skin, and yellowing of the eyes persist despite using medication, it may mean that the treatment is not right for you.
- Talking to your doctor about your symptoms and your feelings is the best thing you can do for your health.
- Even if one treatment doesn't work, there are other ways and medications to manage your condition. So don't be afraid or panic.
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