Cidpedia: Central Texas CIDP Newsletter

Trusted Information and Community for CIDP Patients, Caregivers, and Professionals
www.cidpedia.net

Table of Contents

1. Editor’s Perspective

2. CIDP News & Research: What’s New in 2025

3. IVIg Therapy: In-Depth Guide

4. Hydration & Infusion: The Overlooked Key

5. Ask Cidpedia: Your Questions Answered

6. Caregiver Spotlight: A Journey of Strength

7. Disclaimer

8. Resources

🌟 Editor’s Perspective

Welcome to Cidpedia!
Years of living with CIDP has shown me the power of reliable information and a connected community. Cidpedia exists to help patients, caregivers, and professionals stay informed, share experiences, and navigate CIDP together. Your questions, stories, and feedback shape every issue.

🚨 CIDP News & Research: What’s New in 2025

Breakthroughs & Updates You Need to Know

• Riliprubart Phase 3 Trials:
  Sanofi’s riliprubart is in two pivotal Phase 3 trials-MOBILIZE for patients refractory to standard-of-care treatments and VITALIZE for those with residual disability despite IVIg. Both are double-blind, placebo-controlled, and include a 24-week open-label extension. Riliprubart is a first-in-class monoclonal antibody targeting activated C1s in the classical complement pathway, delivered via weekly subcutaneous injection. These studies aim to confirm efficacy and safety for patients who have failed or have residual symptoms after standard therapy.

• Batoclimab Phase 2b Results:
  Batoclimab, an FcRn inhibitor, demonstrated an 84% responder rate (≥1-point improvement in adjusted INCAT score) among CIDP patients whose IgG was reduced by ≥70%. Additional improvements were observed in I-RODS, MRC-SS, and grip strength at 12 weeks. Safety and tolerability were consistent with previous studies. These results support ongoing development of next-generation FcRn inhibitors for CIDP.

• HyQvia Approval Expansion:
  Health Canada has expanded HyQvia’s marketing authorization for CIDP as a maintenance therapy after IVIg stabilization. HyQvia is the only subcutaneous immunoglobulin in Canada that can be administered monthly, either by a healthcare provider or self-administered with training. Clinical trials show HyQvia reduces relapse rates and provides a convenient home-based option for patients.

Emerging Trends:

• The field is shifting to targeted therapies (monoclonal antibodies, FcRn inhibitors) and patient-centric delivery (subcutaneous options).

• Biomarkers like neurofilament light chain (NfL) are gaining attention for tracking disease activity and treatment response.

  
  

💉 IVIg Therapy: In-Depth Guide

Everything You Need to Know About IVIg for CIDP

• What is IVIg?
  Intravenous immunoglobulin (IVIg) is a first-line, evidence-based treatment for CIDP, recommended by leading neurology societies. IVIg is made from pooled antibodies from healthy donors and delivered directly into your bloodstream, usually at an infusion center. Unlike many immune-suppressing drugs, IVIg provides targeted antibodies to help regulate your immune system and reduce nerve damage.

• Who Should Consider IVIg?

  • Patients with active, disabling CIDP who did not respond to steroids or could not tolerate their side effects.

  • Those who have tried other immunosuppressants or plasmapheresis without benefit.

  • Patients with progressive muscle weakness and sensory loss confirmed by nerve testing.

• How IVIg is Given:

  • Induction: Most start with a loading dose of 2 g/kg over 2–5 days.

  • Maintenance: If you respond, maintenance doses are 0.4–1 g/kg every 2–6 weeks, tailored to your needs.

  • Infusion Experience: Sessions can last several hours. Common side effects include headache, fatigue, or mild allergic reactions. Staying hydrated before and after infusions helps minimize these effects.

• Effectiveness & Personalization:
  Many people see improvement in muscle strength and daily function within weeks. Early treatment can lead to better outcomes, and some may transition to subcutaneous immunoglobulin (SCIg) for home use. IVIg is not effective for everyone and requires ongoing monitoring and dose adjustments.

• Safety Considerations:
  IVIg is generally safe, but not suitable for everyone. People with severe kidney, liver, or heart disease, or those with known IgA deficiency, may need alternatives. Always discuss your full medical history with your provider before starting IVIg.

Original illustration by our co-editor/artist: “Understanding IVIg Therapy”-showing the infusion process, hydration tips, and aftercare reminders.

💧 Hydration & Infusion: The Overlooked Key

Maximize Your IVIg Experience with Smart Hydration

• Why Hydration Matters:
  Proper hydration is a simple but powerful way to improve your IVIg experience. Well-hydrated veins are easier to access, making infusions smoother and less stressful for both patients and nurses. Hydration also helps your body process the immunoglobulin more efficiently and can lower the risk of common side effects such as headaches, dizziness, and fatigue.

• How Much & When:
  Aim to drink water steadily throughout the day, starting at least 24 hours before your infusion and continuing for 24–48 hours afterward. Most adults benefit from at least 64 ounces (eight 8-ounce glasses) daily, but always follow your doctor’s advice, especially if you have kidney, heart, or fluid restrictions.

• Tips for Infusion Days:

  • Bring a refillable water bottle to your appointment and sip during your infusion.

  • Choose water, coconut water, or low-sugar electrolyte drinks for optimal hydration.

  • Avoid caffeine and alcohol, as they can dehydrate you.

  • Eat hydrating foods like cucumber or watermelon on infusion days.

• Hydration & Side Effect Prevention:
  Studies and patient reports consistently show that hydration can help reduce the frequency and severity of headaches, muscle cramps, and post-infusion fatigue. Some clinics even offer fluids intravenously before or after IVIg for those prone to side effects.

• Tracking Your Intake:
  Consider using a hydration app or journal to ensure you’re meeting your fluid goals, especially on treatment days. Small, consistent efforts can make a big difference in your comfort and recovery.

  
  

❓ Ask Cidpedia: Your Questions Answered

Q: What does a positive asialo-GM1 antibody mean if my symptoms are symmetrical?
A: Asialo-GM1 antibodies are more often linked to multifocal motor neuropathy, which usually causes asymmetrical symptoms. In CIDP, positive ganglioside antibodies can occur but aren’t definitive for diagnosis. Symmetry in weakness and nerve conduction findings are more consistent with CIDP. Always discuss lab results and EMG findings in detail with your neurologist, as interpretation depends on the full clinical picture.

Q: Are there local support groups for CIDP in Central Texas?
A: Yes, Cidpedia’s private Facebook group welcomes patients, caregivers, and professionals. We also share news about in-person meetups in Austin, Waco, and online.

💪 Caregiver Spotlight: A Journey of Strength

Real Stories, Real Support for CIDP Caregivers

• The Heart of Caregiving:
  Caregiving is more than a role-it’s a commitment to dignity, resilience, and love. For many in the CIDP community, caregivers are the steady hands and hearts that make daily life possible.

• A Central Texas Story:
  When my partner was diagnosed with CIDP, our world changed overnight. Suddenly, I became not just a spouse but a full-time advocate, nurse, and emotional anchor. There were days filled with medical appointments, medication schedules, and uncertainty. But there were also moments of deep connection-celebrating small victories, learning new routines, and finding laughter in unexpected places.

Caregiving taught me the value of patience, the importance of self-care, and the strength that comes from community. I learned to ask for help, to reach out to others walking a similar path, and to accept that some days would be harder than others. Through it all, I discovered that caregiving is not just about giving-it’s about growing together, finding hope, and honoring the journey.

• Advice for Fellow Caregivers:

  • Take breaks and care for yourself-your well-being matters.

  • Build a support network; you don’t have to do this alone.

  • Celebrate every step forward, no matter how small.

    

⚠️ Disclaimer

Cidpedia is an independent, patient-led newsletter. All information provided is for educational and informational purposes only and is not intended as medical advice, diagnosis, or treatment. We are not medical professionals. Always consult your physician or qualified health provider with any questions regarding your health or medical conditions.

We respect your privacy and adhere to HIPAA guidelines when sharing stories or community contributions. All shared experiences are anonymized unless explicit permission is granted.

📚 Resources

• Phase 3 Trial Designs Evaluating Riliprubart, a C1s-Complement Inhibitor, in CIDP. Sanofi Medical Congress, 2024.

• Neurology Journal: Phase 3 Trial Designs Evaluating Riliprubart, April 2025.

• Clinical Trials Set Out to Evaluate Riliprubart for CIDP Care. Rare Disease Advisor, April 2025.

• Roivant Announces Positive Results for Batoclimab Phase 2b CIDP Study. Markets Data, March 2025.

• Takeda Canada: Health Canada Expands Marketing Authorization for HyQvia, March 2025.

• Intravenous Immunoglobulin Initiation in Patients with Chronic Inflammatory Demyelinating Polyneuropathy. PMC, May 2023.

• EAN/PNS CIDP Guidelines, 2021.

• GBS|CIDP Foundation International.

• Central Texas Neurology Group.

• Cidpedia Facebook Community: www.cidpedia.net

• UT Southwestern Neurology Research.

• Canadian Agency for Drugs and Technologies in Health (HyQvia updates).

• Peer-reviewed journals: Neurology, Journal of Neuroimmunology.

All data in this issue was verified MAY 2025 with the above sources. For questions about the research, contact the editorial team.