Have you been diagnosed with Primary Biliary Cholangitis, or PBC for short, and are you just starting treatment? Then you probably have a little question in your mind, a little hesitation, "Will this medication really work for me? Will the disease get better?" Actually, this is not only for you, but also something that many people who are treated for this kind of disease feel. Sometimes the first medication that the doctor prescribes may not work for you. This is very normal, don't worry about it. The most important thing is to talk openly with your doctor about how you are feeling and the results of the treatment.
First, let's simply understand, what is PBC?
The name may sound a little scary to you. But let's keep it simple. Primary Biliary Cholangitis (PBC) is a condition that affects the small bile ducts inside your liver . Think of these bile ducts as pipes in your body. These pipes carry bile, a fluid produced in the liver that helps digest food.
In PBC, our body's own immune system mistakenly attacks these bile ducts and gradually destroys them. Then, the bile fluid can't flow properly and gets stuck inside the liver. Just like when a water pipe gets clogged, the water fills up in one place and everything around it gets wet, this fluid starts to damage the liver. If left untreated, over time, this damage causes scarring of the liver, which we call cirrhosis .
But the good news is that there are now many good medications to control this disease and reduce its damage. Together with your doctor, you can develop a treatment plan that is right for you.
The PBC treatment journey - not everything works out right away
This is something we all need to understand. Treating PBC can sometimes be like an experiment. That is, because everyone's body is different, the same medicine doesn't work for everyone. The first medicine your doctor gives you may not work as well as you'd like.
It's not your fault or the doctor's fault. It's the nature of this disease. The important thing is that you become an active member of your treatment team on this journey.
What does that mean? It means you need to pay attention to the changes in your body, the symptoms, and the way you feel after taking the medication. And you need to tell your doctor all of that. Only then will he be able to understand if the treatment is working or if you need to make a change.
Your PBC treatment team - you are not alone on this journey!
Managing a condition like PBC is a team sport. There are a variety of medical specialists who can help you. Remember, you are not alone. Let's take a look at who typically makes up this team.
| Medical specialist / health professional | How can I help you? |
|---|---|
| Gastroenterologist (digestive system specialist) | A doctor who specializes in diseases of the digestive system, such as the liver, stomach, and intestines. This may be the first doctor you see after being diagnosed with PBC. |
| Hepatologist (liver specialist) | This doctor is particularly knowledgeable about liver diseases and plays a very important role in treating conditions like PBC. |
| Primary Care Doctor (your family doctor) | You probably went to him when you first started having symptoms. He will look at your overall health, working with other specialists to assess your well-being. |
| Radiologist (radiology specialist) | He is the one who performs special tests, such as CT scans and MRI scans, to check the condition of your liver and analyzes their reports. |
| Registered Dietitian | When you have liver disease, you need to be especially careful about what you eat. She/he will help you plan a healthy diet that won't put a strain on your liver. |
| Liver Surgeon | If a liver biopsy is needed to diagnose the disease, or if the disease becomes severe in the future and a liver transplant is needed, the assistance of this surgeon is required. |
How to talk to the doctor? - Don't forget to ask these things!
It is very important to build a good, trusting relationship with your Gastroenterologist or Hepatologist so that you can ask your questions without any fear or doubt.
Prepare a little before meeting.
It will help you a lot to make a little preparation at home before you go to see the doctor.
- Write down your symptoms: Write down in a journal details such as when you experience itching, fatigue, and pain, and how you feel.
- Make a list of questions: Sometimes you forget what you want to ask the doctor, so write down all the questions you have in mind.
- Tell your doctor about other medications you are taking: If you are taking any other medications, vitamins, or traditional medicines besides the medication you are taking for PBC, be sure to tell your doctor about it.
Important points to discuss
Don't hesitate to ask your doctor questions like the ones below. These are very important for your treatment journey.
- "Doctor, what are the main goals of this treatment? What do we expect from these medications?"
- " How do we know for sure if this medicine is working properly? What blood tests or scans are needed?"
- "I've just had this symptom. Could this be a side effect of the medication? What should I do?"
- "If this treatment doesn't work for me, what are our next options? "
- "What changes do I need to make in my diet and lifestyle ?"
Remember, there are no 'stupid questions'. You have the right to ask anything you want about your body and your treatment. Your doctor wants you to be informed.
This conversation with your doctor is the best way to make your treatment plan work. Tell us everything you're feeling, your fears, your hopes. Then, together, you can make decisions that will bring you the best results.
Take-Home Message
- Although Primary Biliary Cholangitis (PBC) is a disease that affects the bile ducts of the liver, the condition can be well controlled with modern treatments.
- It is normal for the first treatment you are prescribed to not be successful. Don't panic and stop treatment.
- Maintain a good, open relationship with your treatment team, especially your Gastroenterologist or Hepatologist.
- Before you go to see the doctor, it's very helpful to write down what you're feeling and what questions you want to ask.
- Be an active participant in treatment decisions. Express your thoughts and feelings. It is a great strength in your recovery journey.
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