Living with IgG4-RD: How to handle symptoms and flares

Last updated June 2, 2025, by Agata Boxe
✅ Fact-checked by Patrícia Silva, PhD

 

Living with IgG4-related disease (IgG4-RD) often involves dealing with fatigue, swelling, unexplained weight loss, and other symptoms, sometimes without warning. Flares can occur unexpectedly, bringing uncertainty and anxiety about what’s to come.

While you can’t always predict or prevent flares, learning how to manage IgG4-RD symptoms — from staying in touch with your care team to coping with fatigue — can make a meaningful difference in your day-to-day life.

Managing daily symptoms

IgG4-RD symptoms can vary from person to person, so what works for someone else may not work for you. Still, following your treatment plan as prescribed is a key first step to managing your symptoms.

Because this condition can affect multiple organs and tissues, managing it often means working with a multidisciplinary care team. Depending on your needs, your team might include:

  • a rheumatologist
  • a gastroenterologist
  • an ophthalmologist
  • a pathologist
  • a radiologist
  • an immunologist.

If you have been prescribed medication, be sure to take it as directed. You can set up reminders on your phone or with a virtual assistant to avoid accidentally skipping a dose.

Keeping track of your symptoms in a journal or using an app and regularly communicating with your healthcare team can also be helpful.

Finally, certain lifestyle adjustments may help you manage your symptoms.

  • Prioritize rest and conserve energy to prevent or manage fatigue.
  • Ask your doctor or a physical therapist for exercise recommendations to boost your physical and emotional health.
  • Eat a healthy diet rich in vegetables and fruits to support your immune system and help combat chronic inflammation.
  • Consider consulting a registered dietitian for nutrition tips related to IgG4-RD.
  • Talk to a therapist to help you manage the toll that the disease can take on your mental health.

Preventing flares

While IgG4-RD flares tend to be unpredictable, stopping or tapering commonly used IgG4-RD medications is a known trigger.

Taking your prescribed medication as scheduled is the most important factor in preventing flares. Do not stop taking it without consulting your doctor, even if you’ve been feeling fine for a while. A lack of clear symptoms can mean that the medication is working.

If you experience potential side effects, report them to your provider so that they can examine and address the issue.

Scheduling regular checkups can also help prevent symptoms from progressing.

Taking care of your overall well-being is important too. As challenging as it can be with a chronic disease, try to get enough sleep and manage stress as much as possible. Relaxation techniques, such as deep breathing and mindfulness meditation, can be helpful.

For persistent sleep issues, consult a therapist or sleep expert, who may recommend cognitive behavioral therapy for insomnia or other evidence-based approaches.

Managing and treating flares

Flares can occur even if you have done your best to follow your IgG4-RD treatment plan and have taken other preventive measures.

If you experience a flare, the first step is to consult your care team and report the flare to them as soon as possible. They may choose to treat your IgG4-RD flare-up symptoms with medication, so if that’s the case, take it as prescribed and follow any other instructions they may provide.

Additional tips for managing flares include:

  • Get plenty of rest while you are going through an IgG4 flare-up to manage fatigue and try to prevent your symptoms from worsening.
  • Don’t hesitate to ask family and friends for help with chores and other responsibilities, as delegating tasks can help you conserve energy, allowing you to focus on your health.
  • Consider asking your employer for accommodations, such as time off or permission to work remotely until you recover, depending on your exact symptoms and circumstances.

Building a sustainable routine

Because IgG4 flares can be so unpredictable, having a flexible but steady routine in place can make tough days more manageable.

Consider these tips for building a sustainable routine:

  • Establish a consistent medication schedule and stick to it by setting reminders.
  • Get up and go to sleep at the same time every day, including weekends.
  • Sprinkle regular breaks into your workday to manage fatigue.
  • Don’t be afraid to say no to social commitments or to cancel them altogether.
  • Reward yourself through relaxing hobbies like reading, painting, or doing puzzles.

In addition to maintaining a consistent routine, connecting with others who understand what you’re going through can be incredibly beneficial.

For example, groups like IgG4-RD Connect can offer support, resources, and a sense of community. You can also consult The IgG4ward! Foundation for more information on living with the disease.

The unpredictability of IgG4-RD flares can cause significant stress and worry, but guidance from your care team and strong social support can help make flare-ups more manageable.

Remember that treating yourself with kindness and practicing compassion can go a long way when you’re navigating life with a chronic illness and the symptoms that accompany it.

IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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