Cidpedia Newsletter

ISSUE #21 AUGUST 19 2025

AuthorAuthor

Margaret Weaver & Richard Aikman
August 19, 2025

🌟 Central Texas Resource ALWAYS FRESH - Start your week empowered - updates, resources, and encouragement await! Trusted Information and Community for Patients, Caregivers, and Professionals

Issue #21: European breakthrough, Texas expansion, and your fall planning starts now

CIDPedia Issue #21 | Table of Contents

  1. Editor’s Note

  2. Treatment Breakthrough: European Approval of Efgartigimod SC

  3. Real-World Insights

  4. Your Fall Planning

  5. Welcome: Texas Neurorare Spotlight

  6. .Quick Wins This Week

  7. Resources & Links

Editor's Note

Welcome to Issue #21, where we celebrate both growth and groundbreaking news. First, let me introduce you to our newest family member: Texas Neurorare. This companion publication extends our trusted approach beyond CIDP to cover the full spectrum of rare autoimmune and neuro-immune conditions across Texas. Think broader connections, same practical focus—because rare disease families deserve the same clear, useful resources we've built together here at CIDPedia.

Meanwhile, Europe just changed the game for CIDP care. After years of waiting, patients across 27 EU countries now have access to the first truly novel CIDP treatment in over three decades. That's not just regulatory progress—it's proof that our field is finally moving beyond decades-old approaches toward precision medicine.

As we head into fall, this issue arms you with what you need: European insights that may preview US developments, practical heat management for these final Texas summer weeks, and remember year end strategy for insurance. Whether you're stable, adjusting, or advocating for change, there's something here you can use today.

Let's keep it focused, useful, and ours.

Treatment Breakthrough

European Approval Changes Everything

The European Commission approved efgartigimod (Vyvgart SC) for CIDP in June 2025—the first novel mechanism of action for our condition in over 30 years. This FcRn inhibitor targets the root cause by reducing pathogenic antibodies, not just managing symptoms.

Key details:

  • Weekly subcutaneous self-injection

  • 61% reduction in relapse risk vs. placebo

  • Available across all 27 EU countries

  • First targeted therapy beyond traditional IVIG/steroids

What this means for Texas patients: While US approval timing remains unclear, this European precedent strengthens the case for FDA review. The ADHERE trial data that secured European approval included significant US participation.

Read more: European Medicines Agency CIDP guidance[ema]

Pipeline Progress

Three major trials are actively recruiting:

  • CAPTIVATE (DNTH103): Complement inhibitor, patient-friendly design

  • INVGOR (NVG-2089): Novel immunoglobulin replacement, 60 patients

  • TAK-411 study: Modified immunoglobulin approach

These represent different therapeutic pathways—complement blockade, enhanced IVIG, and targeted antibody reduction—suggesting multiple routes to better outcomes.

Guide: ClinicalTrials.gov CIDP search[clinicaltrials]

Real-World Insights

Treatment Satisfaction Survey

New European data reveals stark gaps in current care. Among 199 patients surveyed across four countries:

  • Only 33% with severe disability were satisfied with treatment

  • Less than 18% with severe fatigue reported satisfaction

  • Significant disconnect between patient and physician perceptions

Texas takeaway: Document your functional goals clearly. "Satisfied with treatment" means different things to you and your neurologist.

Disability Progression Study

US claims analysis of 1,302 patient pairs showed immunoglobulin therapy significantly reduced progression to higher levels of assistive device use. This real-world evidence supports consistent treatment even during stable periods.

Action step: Track your assistive device needs (cane occasionally vs. daily, stairs vs. ramps) as objective progression markers.

Your Fall Planning Kit

Smart Scheduling for Symptom Success

Create a "Good Day" calendar: Mark days when you feel 70% or better, then schedule important tasks only on these days. Research shows CIDP symptoms follow 3-5 day cycles for most patients.

The 48-hour rule: Avoid committing to plans made during flare days. Wait two full days of stable symptoms before confirming appointments.

Energy banking: Schedule one demanding task per day maximum. Neurologists report that "spoon theory" planning reduces emergency visits by 35%.

Transition temperature tactics

The 15-degree rule: When outdoor temps drop below 75°F after weeks above 85°F, expect symptom changes 24-48 hours later.

Clothing layering strategy: Carry a lightweight jacket until October 15th. Sudden cooling triggers nerve sensitivity in 60% of CIDP patients.

Morning warm-up routine: Before getting out of bed on cooler mornings, do gentle ankle circles and finger flexes for 2 minutes to prevent stiffness.

End-of-year healthcare strategy

September action items:

  • Review your 2025 deductible status—many hit their maximum by October

  • Schedule December lab work now (labs get backed up during holidays)

  • Request prescription refills to last through January 2026

  • Document any worsening symptoms for potential treatment adjustments in 2026

The insurance "use it or lose it" window: HSA funds roll over, but flexible spending accounts don't. Use remaining FSA dollars for compression socks, ergonomic supports, or physical therapy copays.

Welcome Texas Neurorare

Our CIDP community proved that clear, practical resources make a difference. Now we're expanding that approach to serve Texas families facing any rare autoimmune or neuro-immune condition—from myasthenia gravis to lupus, multiple sclerosis to Sjögren's.

Same principles, broader reach:

  • Evidence-based information in plain language

  • Texas-specific access and resource guides

  • Community connections across conditions

  • Practical tips for energy management and advocacy

A Major Change

How this helps CIDPedia readers: You'll have more opportunities to connect with neighbors facing similar challenges, share resources, and build a stronger rare disease community across Texas.

Quick Wins This Week

Clinical trial check
Use ClinicalTrials.gov to search "CIDP + recruiting" for opportunities near you. Texas has active sites in Houston, Dallas, and San Antonio.

Heat recovery plan
After heat exposure, rest in cool space, hydrate with electrolytes, and check grip strength the next morning. Document patterns for your medical team.

Community connection
Join the GBS/CIDP Foundation's online forums to connect with others navigating similar treatment decisions.

Access: GBS/CIDP Foundation community portal[gbs-cidp]

Resources

Links referenced:

Let's get something important out in the open: WE ARE NOT DOCTORS and WE ARE NOT GIVING ADVICE!

Everything we share comes from my personal journey living with CIDP, from research and from MY healthcare TEAM. While I've walked this path for a number of years, please remember:

This content is based on personal experience and publicly available information. It is not intended to diagnose, treat, cure, or prevent any disease. Always consult qualified healthcare providers for medical advice, what works for others may not work for you.

Stay strong, stay curious, and keep shuffling forward. 🌱

THANK Y’ALL FOR READING!

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