With IgG4-RD, disease remission is a process toward progress

Note: This column describes the author’s own experiences with Rituxan. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

In preparation for my upcoming Rituxan (rituximab) infusion, I revisited a symptom tracker journal I started four years ago following all my diagnoses.

I’m still on medications and receive infusion treatments every six months, but I’ve noticed significant improvements in my physical health, symptoms, and the overall severity of my conditions.

Still, people often ask, “Didn’t you get infusions? Shouldn’t you be better now?” It’s an awkward moment for both of us. I have to manage my frustration while explaining that my immunoglobulin G4-related disease (IgG4-RD) is treatable, but not curable.

Remission is possible, though it isn’t a “one and done” scenario. It’s an individualized process because some patients have only one organ affected, while others, like myself, have multiple organ or systemic involvement.

Based on my assessments with my doctors, I am 70% better than I was at the time of my diagnosis. This is why I often advise others with IgG4-RD to track and log their symptoms consistently. This helps to monitor progress and allows us to communicate more effectively with our healthcare team about symptom trends and patterns.

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Indicators of a relapse

While I’m just a few days away from my next infusion, I am having symptoms that I recognize as signs of a relapse. Since my disease is multisystemic, I have head-to-toe involvement and will have more relapse indicators than others.

I experience severe whole-body dryness because all of my moisture-producing glands are involved with my condition, not just the lacrimal or salivary glands. My eczema flares up — eczema has been linked to the list of relapse indicators — resulting in cracked and broken skin, bruises, and prurigo nodularis. I also have psoriatic arthritis and rheumatoid arthritis, but Rituxan helps.

I also endure three different types of itch: vasculitis itch with visibly inflamed vessels; eczema and prurigo nodularis itch localized in specific clusters; and full-body, small-fiber sensory itch — the sensation of a bug crawling under the skin. Distinguishing between these requires careful observation, documentation through photos, biopsies, and consultations with my care team.

Other symptoms I’m having include increased light sensitivity, stabbing pain in the ears and eyes, vertigo, aura migraines, bulging eye, and the left side of my face visibly droops. I also experience random muscle spasms and tics that resemble Tourette’s, shortness of breath, difficulty walking, random bruising, and whole-body stiffness, especially in the legs and upper thighs. My gastrointestinal involvement leads to inflammatory bowel disease flares before infusions. Fortunately, I’ve started seeing more relief with my infusion treatments, and I’ve been noting this symptom even less frequently than I had earlier this year.

An almost daily challenge is the brain fog and short-term memory issues that are compounded by the onset of dysautonomia with disease progression.

But the type of brain fog I’m having lately feels different. The disconnect between my thoughts and speech often leads to slurred or jumbled words, completely blank moments, and lost trains of thought. This is particularly problematic during important calls, work meetings, and even interviews. I usually address this struggle before the call or meeting, and appoint someone to help me backtrack, if needed.

Remission is near!

The good news is that these symptoms aren’t as severe as they were in previous years and managing them has been easier. Despite the brain fog and occasional memory lapses, I experience symptoms about 70% less frequently than I did four years ago.

Adhering to my treatment plan over the years makes me feel that remission is within reach. With time and experience, I’ve gained maturity in dealing with this disease. I feel as if I’m about to graduate from my own “disease academy!”

My advice to others with IgG4-RD is to trust the process, but also your instincts. Keep detailed notes and communicate regularly with your care team. Ask questions about your individualized treatment plan and maintenance care. Remember, the process leads to progress toward remission!

You’ve got this, warrior. I believe in you.

Note: 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. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.