I have been diagnosed with secondary immunodeficiency linked to a medication I received to treat GPA Vasculitis (Granulomatosis with Polyangiitis). 

My journey with secondary immunodeficiency began following treatment for GPA Vasculitis (Granulomatosis with Polyangiitis) with the drug Rituximab. While this treatment successfully put my vasculitis into remission, it led to unexpected challenges that would take time to fully understand. 

Early signs and symptoms 

In 2023, I began experiencing persistent symptoms that were difficult to attribute to any single cause. The most prominent was a chronic cough that significantly impacted my daily life, often keeping me awake at night. I also experienced frequent swelling and pain in my neck lymph nodes. 

The situation escalated in August 2023 when I was hospitalised due to severe cervical lymphadenitis. The swelling under my jaw became so severe it began affecting my breathing, leading to immediate hospital admission. While initially treated with antibiotics and steroids, this marked the beginning of a challenging period where my symptoms began to seriously affect my quality of life.  

My chronic cough persisted, forcing me to sleep upright on the couch many nights. Social plans were frequently cancelled due to exhaustion, and I developed anxiety about the constant coughing in public settings. The frequent coughing led to recurring sinus infections and a prolonged ear infection that affected my hearing, making social situations particularly challenging. 

The path to diagnosis 

It took approximately eight months from my first significant infection to receive a diagnosis. After relocating to be closer to family support, I returned to the clinic where I had previously received treatment for vasculitis. An MRI scan revealed lung damage from repeated infections, leading to a referral to the immunology department. There, I was diagnosed with secondary immunodeficiency, which was linked to my previous Rituximab treatment for GPA Vasculitis. 

Managing my immunodeficiency 

My current treatment plan includes: 

  • Weekly subcutaneous immunoglobulin infusions, which I self-administer at home 
  • Prophylactic antibiotics 
  • Regular monitoring and follow-up appointments 

Lifestyle adaptations and working life 

Managing this condition has required significant lifestyle changes. I use the spoon theory to help plan my days and have learned to be realistic about my energy levels. Working in education, I’ve implemented strict hygiene practices and maintain appropriate distance in large groups to minimise infection risks. 

My employer has been exceptionally supportive, offering flexible working arrangements including working from home when necessary and accommodating hospital appointments. This support has been crucial, particularly as I require longer recovery times from infections. 

Daily Challenges 

The biggest challenges include: 

  • Maintaining patience with the extensive medical admin required 
  • Managing weekly infusions and maintaining confidence in self-administration 
  • Deciding when to seek medical intervention for infections 
  • Balancing energy levels with daily responsibilities 
  • Monitoring and tracking symptoms effectively. 

Support and resources 

Immunodeficiency UK has been an invaluable resource, particularly their case studies which provided hope and practical advice during the early stages of my diagnosis. Reading about others’ experiences helped me see a positive future and gave me confidence that my symptoms could be managed effectively. 

Advice for Others 

For others facing a similar diagnosis, I recommend: 

  1. Create systems to make medical admin easier, such as preparing infusion packs in advance 
  2. Keep convenient meal options available for low-energy days 
  3. Recognise that managing your condition requires significant time and energy – adjust your expectations accordingly 
  4. Celebrate your progress, no matter how small it might seem 
  5. Build a support network and be open with those around you about your needs 
  6. Establish routines that work for you and prioritise your well-being. 

Looking forward 

While managing secondary immunodeficiency presents daily challenges, understanding my condition has been empowering. Learning to administer my own treatments and developing effective routines has given me confidence in managing my health. With proper support and management strategies, it’s possible to maintain a good quality of life while living with secondary immunodeficiency. 

Posted February 2025