Managing your condition

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To help you navigate life with PI, we’ve created a treatments section to provide you with information on various treatment options. We also offer a Living with PI section that highlights different aspects of PI at various ages. We invite you to explore both areas to further your understanding of PI.

Treatments

We've pulled together a brief overview of the different types of treatment available for primary immunodeficiency (PI).

Talk to your doctor about your treatment options. Only your doctor can determine which treatment is best for your type of PI and your specific needs.

Immunoglobulin (Ig) Treatment

Ig treatment is used to temporarily replace some of the antibodies (immunoglobulins) that are missing or not working properly in people with PI.

The goal of Ig treatment is to use IgG obtained from plasma donated by healthy individuals. This is done to keep enough antibodies in the blood of patients with PI to help the body fight off bacteria and viruses. Plasma, a special part of the blood containing antibodies, delivers nutrients to the cells of various organs and plays a critical role in maintaining normal blood pressure.

  • Intravenously, or into a vein.
  • Subcutaneously, which means under the skin.

Intravenous treatments (IV) are infused directly into the bloodstream and administered once every 3 or 4 weeks.

Subcutaneous (SC or “subQ”) treatments are infused under the skin and can be administered daily to up to every 3 or 4 weeks, depending on the product. Doctors work together with their patients to determine which route of administration is best, taking into consideration health needs and lifestyle.

Types Frequency Average Infusion time Mode Location More info
Antibiotics Varies based on your needs and the recommendation from your HCP N/A Oral Home
SubQ Ig Replacement Daily to once every two weeks 1-2 hours subQ Home, HCP Office, Hospital Learn more about one option
Every 3 or 4 weeks 2 hours subQ Home, HCP Office, Hospital Learn more about one option
IV Ig Replacement Every 3 or 4 weeks Up to 6 hours IV Home, HCP Office, Hospital Learn more about one option

Talk to Your Doctor

It’s important to talk with your doctor to understand your treatment options and to make sure you’re on a plan that’s right for you.
Antibiotics

For some people with PI who have a history of bacterial infections, doctors may prescribe prophylactic antibiotics.

Unlike antibiotics used to treat an infection, prophylactic antibiotics are given to help prevent an infection. They are usually given in low doses.

Types Description Frequency Mode Location
Antibiotics One or multiple courses of low dose antibiotics used prophylactically to lower risk of getting infections Varies based on your needs and the recommendation from your HCP Oral Home

Talk to Your Doctor

It’s important to talk with your doctor to understand your treatment options and to make sure you’re on a plan that’s right for you.
Stem Cell Therapy

Hematopoietic stem cells (HSCs) form the different types of blood and immune cells.

For some types of PI, hematopoietic (blood forming) stem cell transplantation (HSCT) may be an appropriate treatment option. This is when hematopoietic stem cells from a healthy person are transfused into the person with PI. It is not surgery. The process is more like a blood transfusion.

The traditional way to perform HSCT is by bone marrow transplantation, thereby utilizing the HSCs from another person's bone marrow and transfusing it into the person with PI. But now, HSCs can also be taken from cord blood (the blood removed from the placenta after childbirth). Cord blood can be a HSC source for immune and blood systems.

Talk to Your Doctor

It’s important to talk with your doctor to understand your treatment options and to make sure you’re on a plan that’s right for you.
Gene Therapy

Most forms of PI are caused by errors (mutations) in specific genes.

Gene therapy uses a person's own HSCs that have been modified by addition of a normal copy of the gene in order to fix the genetic mutation. This may be an option for individuals with some types of PI who cannot be matched with appropriate stem cell donors. Currently, gene therapy remains experimental and is not yet used routinely.

Talk to Your Doctor

It’s important to talk with your doctor to understand your treatment options and to make sure you’re on a plan that’s right for you.

Living With PI

Along with your treatment plan, maintaining a healthy lifestyle may help you manage PI through various stages of life.

Explore the following topics to learn more about simple activities that may have a positive influence on your PI management.

Nutrition

A healthy diet is important for everyone, especially those living with PI. Eating the right foods gives your body the nutrients it needs to function as well as grow, maintain, and repair itself. A balanced diet is especially important for people with PI because not getting enough nutrients can lead to illnesses, including an increased risk of infections.

People with PI usually do not need a special diet unless they have another condition to manage. You and your doctor or nutritionist should discuss the diet that will be best for you.

Make sure to check with your doctor before making any changes in your diet, such as adding vitamins or nutritional supplements.
Exercise

Regular exercise and staying fit can make you feel good and help you maintain a healthy lifestyle. A person with PI may participate in almost any type of exercise, but for some types of PI, contact sports or swimming in the ocean or fresh water should be avoided. Check with your doctor to see what kind of exercise is right for you.

Regular exercise is a great way to reduce stress and anxiety.
Hygiene

Trying to avoid infection is very important for a person with PI, and practicing good hygiene is key. You and the people in your home should bathe regularly and practice good handwashing techniques.

Proper dental care is also important for people with PI to help avoid tooth decay and related infections. Brushing and flossing, as well as regular dentist visits, should be a part of your routine.
Sleep

Getting the right amount of sleep is another important part of a healthy lifestyle. Not having the same sleep patterns each day can have a negative impact on your immune system. Try to make sure you are getting the same amount of sleep each night by going to bed and waking up at the same time

Getting the right amount of sleep is another important part of a healthy lifestyle.
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