🌟 Cidpedia: Central Texas CIDP Newsletter

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Table of Contents

1. Editor’s Perspective

2. I Got a Phone Call - Reflections of My Story

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

4. Living with CIDP: Time Management & Financial Navigation

5. Mental Health & Community: Upcoming Webinars

6. Advocacy & Empowerment: Clinical Trials & Resources

7. Myelin Re-growth

8. Resources

   

🌟 Editor’s Perspective

Living with CIDP means adapting to constant change - new treatments, shifting symptoms, and evolving needs. This month, we’re focusing on fresh hope from cutting-edge research and practical strategies to simplify daily life. Whether you’re newly diagnosed or a long-time warrior, remember: every small step forward is a victory. Let’s dive in!

I Got A Phone Call!! When My Neurologist Called: What Does “Clean” Mean with CIDP?

My phone rang with a call I never expected. It was my neurologist, my angel, the one who has walked this winding road with me through tests, through treatments, some highs and some lows. Her voice was calm, but carried a weight of news: “Your latest tests look good, I think it’s time to stop all treatments.” I thought, what do you call that? Maybe ”clean” for lack of a better word - so that’s the word I’ll use.

I sat there, phone in hand, not sure whether to cheer or cry. “Clean?” I asked myself. Nobody has to remind me that CIDP doesn’t really have a cure. But for now, there’s no sign of active disease. No new nerve damage, no worsening symptoms. My labs were good. It’s the best news I’ve had in years.Three different “approaches” and finally I was feeling like something might work. It was shock and awe.

Still, my mind raced. For so long, my life has revolved around treatments - infusion days, side effects, scheduling, hoping for improvement, bracing for setbacks. I’ve gotten used to measuring time in weeks between appointments, in the number of pills left in the bottle, in the way my hands and feet “feel” each morning. Now, suddenly, I’m told I can stop. No more home infusions. Sometimes from a stranger and sometimes from someone very special that comes to your house and changes your life. No more “treatment day” blues, no more planning my life around the next dose.

It’s a strange mix of relief and uncertainty. I’m grateful, of course. These treatments have given me so much - strength, independence, hope. But I’m also nervous. What if the symptoms come back? What if I lose ground? There’s no roadmap for this part of the journey.

I remind myself that “remission” - or whatever we call it in CIDP - doesn’t mean the past didn’t happen. I still have major ‘pyropathy’ and all the nice things left over from extensive nerve damage. Numb does not come close to the spectrum of feelings I have. Fatigue, and memories of the hardest days still come and go. But I also have proof that things can get better, even when it seemed impossible.

So for now, I’ll take it one day at a time. I’ll listen to my body, stay in touch with my care team, and try to trust this new chapter. Maybe “clean” isn’t the perfect word, but today, it feels really good. And that’s enough because today I played editor, wrote this article and felt like I was NORMAL.

TOMORROW I HOPE YOU GET THE CALL!

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

1. TAK-411 Phase 2 Trial Opens

A new clinical trial at the University of Pennsylvania is testing TAK-411, a hypersialylated IgG therapy designed to reduce inflammation in CIDP. Key details:

• Eligibility: Adults with CIDP unresponsive to IVIg or steroids.

• Dosing: 400 mg/kg induction dose, followed by 200 mg/kg every 3 weeks.

• Primary Goal: Improve functional ability (I-RODS score) by Week 24.

• Trial Timeline: Runs through June 2028.

  TAK-411 Phase 2 Trial: A New Hope for Tough-to-Treat CIDP

  TAK-411 is an experimental therapy being tested for CIDP patients who haven’t improved with IVIg or steroids. This “hypersialylated” IgG is designed to reduce inflammation more effectively than standard treatments. In the trial, participants receive a high initial dose, then regular infusions every three weeks. The main goal is to see if movement, grip, and daily function improve by week 24. TAK-411 represents a new direction in CIDP research, offering hope for those with stubborn symptoms and a chance to benefit from the latest scientific advances.

2. Riliprubart Advances in Phase 3 Trials

Sanofi’s Riliprubart, a complement pathway inhibitor, shows promise for refractory CIDP:

• MOBILIZE Trial: Targets IVIg/steroid non-responders.

• VITALIZE Trial: Compares riliprubart to IVIg in maintenance therapy.

• Key Benefit: Weekly subcutaneous injections vs. traditional infusions.

  Riliprubart Phase 3 Trials: A New Approach for Refractory CIDP

  Riliprubart is a promising new drug for CIDP patients who haven’t responded to standard treatments. Unlike older therapies, it targets the complement pathway-a part of the immune system that drives nerve inflammation. Two large phase 3 trials are underway: MOBILIZE (for those unresponsive to IVIg or steroids) and VITALIZE (comparing Riliprubart to IVIg for maintenance). Riliprubart is given as a weekly injection under the skin, which may be more convenient than traditional infusions. Early results show symptom improvement and less nerve damage in many participants. While still experimental, Riliprubart offers hope and flexibility for those running out of options, highlighting innovation in CIDP care.

3. Autoimmune Nodopathy vs. CIDP: New Diagnostic Clues

A recent Muscle & Nerve study highlights differences:

• Nerve Ultrasound: Cervical roots are larger in autoimmune nodopathy (anti-NF155/Caspr1).

• Conduction Block: More common in nodopathy (61.9% vs. 36.6% in CIDP).

• Takeaway: Antibody testing is critical for treatment-resistant cases.

  Autoimmune Nodopathy vs. CIDP: Key Differences & Implications

  Autoimmune nodopathies (AN) are distinct from CIDP, linked to antibodies (e.g., anti-NF155, Caspr1) targeting nerve signal junctions (nodes of Ranvier). Patients with AN often show unique features: enlarged nerve roots on ultrasound, frequent nerve signal disruptions (“conduction blocks”), severe balance issues (ataxia), and autonomic/cranial nerve involvement. Unlike typical CIDP, AN responds poorly to IVIg, often requiring alternatives like rituximab or plasma exchange. Testing for these antibodies is critical when CIDP symptoms are atypical or treatment-resistant, enabling precise diagnosis and tailored therapies. Recognizing AN ensures better outcomes, emphasizing the need for personalized approaches in autoimmune neuropathies.

  

💡 Living with CIDP: Time Management & Financial Navigation

Time-Saving Hacks from the Community

• Backwards Planning: Start with your end goal (e.g., infusion appointment) and work backward to schedule tasks.

• Digital Calendars: Sync medical appointments with family/friend events (e.g., Google Calendar).

• Errand Efficiency: Group tasks by location or use delivery apps for groceries/medications.

Financial Assistance Simplified

• Insurance Appeals: Use the GBS|CIDP Foundation’s step-by-step guide to challenge denials.

• Patient Assistance Programs: Explore co-pay grants for IVIg/SCIg through PAN Foundation.

• Medicaid/Medicare Tips: Verify in-network neurologists annually during open enrollment.

💬 Mental Health & Community: Upcoming Webinars

May 2025 Events

• “Coping with Anxiety & Depression” (May 20): Hosted by the GBS|CIDP Foundation. Register here.

• Caregiver Support Group (May 27): Share strategies for balancing care and self-care.

Sleep Better with CIDP

• Key Tip: Use a “sleep sanctuary” (cool, dark room + white noise).

  Exposure to sunlight within 15 minutes of waking helps set your body clock.

  Gentle exercise during the day can improve sleep quality and reduce nighttime wakefulness

  

🔥 Advocacy & Empowerment: Clinical Trials & Resources

Join a Trial, Shape the Future

• Active Studies:

  • Riliprubart (Sanofi): For refractory CIDP. Enroll here.

  • Batoclimab (Immunovant): FcRn inhibitor for rapid progressors.

• Why Participate? Early access to therapies + contributing to research.

GBS|CIDP Foundation Updates

• 2025 Walk & Roll: Virtual/in-person events starting June 1. Join a chapter.

Patient Registry: Share your data to accelerate research.

Nerve Sheath Regrowth in CIDP: What to Expect

If you're experiencing nerve sheath (myelin) regrowth in CIDP, here’s what you can realistically expect, based on current research and clinical insights:

1. Slow, Gradual Improvement

• Rate of regeneration: Peripheral nerves can regrow at ~1 inch/month (1 mm/day) if the underlying cause (e.g., inflammation) is controlled.

• Early signs: Tingling, itching, or “pins and needles” in affected areas may signal regeneration.

• Functional recovery often lags behind structural repair by weeks/months.

2. Factors Influencing Regrowth

3. Typical Recovery Timeline

• 0–3 Months: Schwann cells clear debris; initial remyelination begins.

• 3–6 Months: Collateral nerve sprouting may restore partial function.

• 6–12 Months: Axon regrowth reaches target muscles/nerves.

• 12–24 Months: Maximum expected recovery; residual symptoms often remain.

4. Realistic Outcomes

• Mild CIDP: Near-complete functional recovery possible with early treatment.

• Moderate CIDP: Improved strength/sensation, but residual numbness/weakness common.

• Severe CIDP: Limited regeneration; focus shifts to preserving remaining function.

Note: Even with remyelination, regenerated nerves often have thinner sheaths and slower conduction speeds than original nerves.

5. Supporting Regeneration

• Control inflammation: Continue IVIg/steroids/immunosuppressants as prescribed.

• Physical therapy: Gentle exercise promotes nerve guidance and muscle reconnection.

• Nutrients: Omega-3s, B vitamins, and alpha-lipoic acid may support healing.

• Avoid neurotoxins: Manage blood sugar, limit alcohol, and quit smoking.

6. When Progress Stalls

• Plateaus are normal: Most improvement occurs in the first 12–18 months.

• Permanent damage likely if:

  • Symptoms persist >2 years despite treatment

  • EMG/NCS show irreversible axonal loss

  • Muscle atrophy is severe

7. Hope vs. Reality

• Success story: Some patients regain 70–90% function with aggressive early treatment.

• Common reality: Many stabilize with 50–70% recovery, adapting to residual symptoms.

Key Takeaway:
Nerve regrowth in CIDP is possible but often incomplete. Early treatment maximizes recovery chances, while chronic damage leads to permanent deficits. Work closely with your neurologist to balance regeneration efforts with symptom management.

📚 Resources

• Newly Diagnosed? Start with the GBS|CIDP Foundation’s toolkit.

• Clinical Trials: CIDP Trial Match.

• Emergency Financial Aid: HealthWell Foundation.

  

ALL Sources verified May 2025

1. Muscle & Nerve, 2024: Autoimmune Nodopathy vs. CIDP

2. Sanofi MOBILIZE/VITALIZE Trial Protocols

3. GBS|CIDP Foundation Financial Navigation Guide

4. Takeda TAK-411 Phase 2 Trial Overview

5. HealthWell Foundation Grants

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