Questions to ask when seeing a doctor about hATTR Amyloidosis

Visiting a doctor can sometimes be a very stressful experience. It can feel like there is not enough time to ask all of our questions and concerns. This is especially true when it comes to complex, rare conditions like hATTR amyloidosis. Therefore, it is important to prepare a list of questions you want to ask before you go to see your doctor. This will help you to find out everything you need to know and get the treatment that is right for you.

First, let's know exactly about this disease.

Having a good understanding of your condition is very important for treatment, so don't hesitate to ask these questions.

What should I treat for my symptoms?

Tell your doctor about all of your symptoms . You may think some of them are unrelated to hATTR. But it's important to tell them all. Your doctor can then tell you how to treat these symptoms and which symptoms to prioritize. Also, if you are taking different medications for each symptom, they can explain how the medications affect each other (drug interactions).

What stage is my disease in?

There are four main stages of hATTR disease.

• Stage 0: No symptoms.
• Stage I: Mild symptoms, but you can walk.
• Stage II: Walking requires assistance, and more problems occur throughout the body .
• Stage III: Requires the use of a wheelchair or is confined to bed, and severe sensory, motor, and neurological problems occur throughout the body.

Knowing what stage you are in makes it easier for the doctor to plan treatment accordingly.

What organs in my body has this affected?

hATTR is a hereditary condition. In this condition, a protein called transthyretin misfolds and clumps together to form amyloid deposits in organs. Tests can tell if amyloid deposits are present in your heart or other organs. This information is important because the treatment you receive will often depend on the type of amyloid and the organs in which it is located .

Should my family also undergo genetic testing?

Because this is a hereditary disease, after you are diagnosed with the disease, you may want to find out if anyone else in your family has it. If you have children, you may want to consider having them tested for the gene. Treatment for hATTR is more effective if it is detected early . Therefore, being aware of this may give you the opportunity to help another family member.

What are the symptoms that require an emergency visit to the hospital?

Although hATTR can cause a variety of symptoms, it is important to know what to do in an emergency. Therefore, be sure to ask your doctor, "What symptoms should I go to the Emergency Department (ETU) for immediately?"

Things to ask about your treatment

By gaining a clear understanding of the treatment method, you can avoid unnecessary fear and doubt.

How do I decide which treatment is right for me?

Your doctor will recommend treatment based on the stage of your disease and your symptoms. In particular, he or she will check for nerve problems (polyneuropathy), such as numbness, weakness, or inflammation on both sides of your body, or heart muscle problems (cardiomyopathy). Some people may have both. This will help create a treatment plan that is specific to you. If you are already receiving treatment, ask, "Do you want to continue with this treatment or do you need to make a change?"

Are there any new medications that might be suitable for me?

As medical science advances, new treatments are also emerging for this disease. Several new drugs have come onto the market in the past few years. There are different drugs that are suitable for different stages of the disease. So, depending on the stage you are in, ask your doctor if there are new options you can try.

What should I expect from these treatments?

How long will this treatment take?

There is no cure for hATTR, so treatment may be lifelong. However, your doctor will be able to give you a rough idea of ​​how long you will need treatment, based on your stage of the disease, symptoms, and other factors.

What are the possible side effects of these medications?

This varies from treatment to treatment. For example, a drug called `inotersen (Tegsedi)` may not be the first option because it can cause serious side effects. However, drugs like `tafamidis (Vyndamax, Vyndaqel)` have not been shown to have significant side effects in patients with `cardiomyopathy` in trials. When your doctor prescribes a drug for you, be sure to ask about the possible side effects.

What tests should I have done in the future?

This disease progresses over time, especially if left untreated. So you will need to have regular tests to track the progress of the disease. Find out what tests you should have and when.

How do I know if this treatment is successful?

The medical team treating you will see you regularly. They will use tests to monitor the disease, and will ask you to keep them informed about your symptoms to see if the treatment is working.

How do you coordinate specialist doctors and other activities?

Because this disease affects multiple organs in the body, you will need to see multiple specialists.

How is treatment coordinated between these doctors?

Since you will be seeing many different doctors, it is important that they all work as a team, sharing information with each other. You may be able to get treatment at an amyloidosis center, where all of these specialists are in the same hospital. If not, make sure to ask, "How will information be shared between these doctors? Will my test results be shared among everyone, and will they decide what is best for me?"

Who should I ask about my finances and insurance?

You may need a lot of medical care for this. So, ask your doctor, nurse, or hospital administrator, "Will my insurance cover these costs? Who should I talk to about this?" If you need financial assistance, ask about people who can help you with this.

hATTR Amyloidosis, hereditary disease, genetic testing, medical advice, symptoms, treatment methods