PI Conference explores links between fatigue and PI

When Dr. Joud Hajjar started her career as a clinical immunologist several years ago, she noticed that patients with primary immunodeficiency (PI) struggled with extreme fatigue.

“Patients always said they were tired, not just from a bad night’s sleep, but a mom would tell me she can’t get out of bed to help her kids get ready for school or a man says I need to be on disability because I can’t work and I thought, ‘This is really serious,’” said Hajjar at the 2019 Immune Deficiency Foundation PI Conference in a presentation, “Fatigue, Pain, and PI: What do we know?”

Hajjar is returning to the 2022 IDF PI Conference where she’ll delve further into the subject in her presentation, “Battling Fatigue,” set for 12 pm ET on Oct. 7, during the three-day virtual event, which runs Oct. 6-8.

Hajjar, an assistant professor of medicine in the section on immunology, allergy, and rheumatology at Baylor College of Medicine and Texas Children’s Hospital, will discuss how fatigue is often reported by people in the PI community and she’ll present data related to the estimated prevalence, risk factors, and causes of fatigue. She’ll also explore what is being done to improve the quality of life for those who struggle with fatigue.

In her 2019 presentation, Hajjar shared that based on a study of patient data collected by IDF’s USIDNET and subsequent quality of life survey of adult patients with common variable immunodeficiency disorders (CVID), as well as a study on fatigue and the wear-off effect in adult patients with CVID, researchers learned that:

• Prevalence of fatigue is higher in persons with primary immune disorders (PID), especially CVID

• Fatigue affects all ages

• Fatigue is higher in those who use intravenous immunoglobulin (IVIG) therapy because the Ig levels drop, or wear off, more sharply than in subcutaneous immunoglobulin therapy (SCIG)

• Wear-off effect is dependent on infusion intervals

• Fatigue is higher in CVID with non-infectious complications

• Fatigue affects quality of life

During the 2019 conference, Hajjar said that providers should pay close attention to fatigue because it could be an early clinical sign of something else going wrong in the body, particularly for a person with CVID. The underlying problems could be non-infectious complications found in CVID such as bronchiectasis and other chronic lung conditions, gastrointestinal disease, autoimmunity, malignancy, and inflammation.

In particular, Hajjar said that she and her colleagues wanted to study the composition of the microbes in the gut of a person with CVID because they hypothesized that these microbes are driving inflammation. Inflammatory signals then go to the blood, cross into the brain, and cause people to feel fatigued.

To that end, in May 2022 IDF awarded Hajjar with a grant to study the relationship between the gut microbiome, which is the collection of microorganisms that live in the human digestive tract, and inflammation in CVID.

“If we identify that there are specific bacteria that are failing to be bound by immunoglobulins because [IgG products] come from healthy donors…can we enrich immunoglobulin products with specific antibodies or even monoclonal antibodies that…target specific bacteria that we think that they should not be present?” remarked Hajjar.