Signs your PAH treatment isn’t working

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Pulmonary arterial hypertension (PAH) is a form of pulmonary hypertension that causes the small arteries in your lungs to thicken and narrow. This can lead to high blood pressure in the lungs.

Although there is no cure for PAH, there are many treatment options that can help control your symptoms. It’s important to work closely with the doctor to ensure your PAH treatment continues to work.

“Treatments range from drugs to transplantation,” says Dr. Richard N. Channick, pulmonologist at UCLA. Your treatment plan might include:

vasodilators. Blood vessel dilators, called vasodilators, help relax and open up your narrowed blood vessels to help blood flow. Your doctor can give you treatment through an intravenous (IV) infusion, under the skin, as a pill, or by inhalation. With inhalation, you breathe in the medication through a machine called a nebulizer.

anticoagulants. These drugs can help prevent blood clots. The most common form is warfarin (Coumadin, Jantoven).

diuretics. These are “water pills” that help get rid of excess fluid in your body.

digoxin. This drug can help relieve your symptoms, increase your heart muscle contractions, and slow your heart rate.

oxygen treatment. With this therapy, you breathe in air that has a higher concentration of oxygen than normal air.

Surgery. In some cases, you may need surgery. There are a few different types, including pulmonary endarterectomy, balloon pulmonary angioplasty, atrial septostomy, and transplantation.

There are also other treatments that are less commonly used for PAH.

“We have a large list of potential drugs to choose from. What drugs we choose and how we use them is also a very important issue,” says Channick.

The main goal of treatment is to relieve symptoms and slow the progression of your condition. If your PAH seems to be getting worse, you may need to look for new treatment options.

How can you tell if your PAH treatment is effective?

“It doesn’t really matter how you are on the first day; How you respond to the therapies determines how you fare in the long term,” says Channick. There are several ways to measure the success of PAH treatment:

functional class. Doctors can simply ask how you are feeling with the current treatment. You’ll have your symptoms rated on a scale that experts call a functional class.

“The functional class ranges from one to four. One is the [person] has no activity limitations, four means they become symptomatic even at rest or minimal exertion, and two or three are in between,” says Channick. “Their functional class can help us determine how they are doing and whether they need additional therapy.”

exercise capacity. “We can measure this with something called the 6-minute walk test, or how far a patient can walk up and down a hallway in 6 minutes. It’s a pretty powerful measure of how a patient is doing,” he says.

Other exams. “Then we have things that we measure more directly, like blood tests, an echocardiogram to see how the right ventricle is working, or even re-catheterization of the heart in some cases,” says Channick.

Regardless of which method your care team uses, it’s important to check in with your doctor to let them know how you’re doing. Every 3 to 4 months is ideal. Don’t wait until you think your condition has worsened. With regular appointments and testing, it is easier for them to determine your level of risk.

“It’s important that you come regularly, whether you have symptoms or not,” says Channick. “We have many examples of this [people] who felt they were doing pretty well, but maybe not as well as they thought.”

Symptoms don’t always tell the whole story, but it’s still important to pay attention to how you’re feeling.

“Notice a decrease in your exercise tolerance? Things you could do a month ago, for example, you can’t do now,” says Channick.

Weight changes are another possible warning sign.

“One of the problems with PAH that is unresponsive to treatment is fluid retention. It may not always be obvious. People hide liquid in places they can’t even see,” says Channick. “Regular weight checks can help us avoid a real problem or even hospitalization.”

Your treatment may also not be working well if you notice other symptoms, such as:

  • Shortness of breath with normal activities (like climbing stairs)
  • fatigue
  • dizziness
  • fainting
  • Swelling in ankles, stomach or legs
  • chest pain
  • Bluish skin or lips
  • A racing heartbeat
  • An irregular heartbeat
  • Difficulty breathing even when you are not doing anything

What happens if your PAH treatment doesn’t work?

If one treatment doesn’t control your symptoms, something else likely will.

“Most [people] Start with two different medications. Then we do a risk profile, and if they’re not at low risk and they still have limitations, we often add a third drug to the treatment,” says Channick. “So you could get three different treatments for your pulmonary hypertension.”

How you respond will help determine if you are eligible for IVs.

“It’s widely believed that the IV fluids can help even when the pills or other medications aren’t working. If none of that works, we eventually consider a lung transplant,” says Channick.

But that doesn’t happen often.

“The majority of patients only benefit from current therapies and do not require an extreme approach,” says Channick. “Before these medical therapies, the median survival time for this disease was less than 3 years. Now we have long-term survivors. We can still do better, but we’ve certainly come a long way.”

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Signs your PAH treatment isn’t working
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