Cidpedia Newsletter

Edition #9 MAY 27 2025

🌟 Central Texas Newsletter

ALWAYS FRESH-Start your week empowered - CIDP updates, resources, and encouragement await!

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

📑 Table of Contents

  1. 🌟 Editor’s Note

  2. 🧠 Feature Article: Brain Fog & Focus—Sharpening Your Mind with CIDP

  3. 🍽️ Gut Health & CIDP: The Microbiome Connection

  4. 🦶 Advanced Foot Care for CIDP

  5. Just In - Late-Breaking Special: New Phase 4 Trial - IVIg to Vyvgart (Efgartigimod) for CIDP Patients

  6. 🌍 Resource Roundup: Fresh Tools & Support

  7. ⚠️ Disclaimer

🌟 Editor’s Note

Welcome to a brand-new edition! At CIDPedia, we believe every edition is a chance to discover new ways to thrive. This issue is packed with innovative approaches, creative solutions, and the latest in CIDP community. Let’s keep moving forward, together.

I need a break.

🧠 FEATURE: Brain Fog & Focus—Sharpening Your Mind with CIDP

If you live with CIDP, you know that pain and numbness aren’t the only symptoms that can steal your energy. Many in our community describe “brain fog”—that frustrating feeling when your thoughts are cloudy, your memory slips, or you just can’t find the right words. While brain fog isn’t unique to CIDP, it’s a challenge that can make every aspect of life feel harder.

What Does Brain Fog Feel Like?

For some, it’s forgetting why you walked into a room. For others, it’s struggling to follow conversations, losing your train of thought, or feeling mentally exhausted after simple tasks. It’s not just about memory; it’s about processing speed, attention, and the ability to plan or multitask. On tough days, it can feel like your mind is wading through molasses.

Why Does It Happen?

The causes of brain fog in CIDP are varied. Chronic pain, poor sleep, medication side effects, and even the emotional toll of living with a chronic illness can all play a role. Inflammation itself may also impact the brain’s ability to function at its best. And let’s not forget the impact of stress—when your body is in “fight or flight,” your cognitive resources are often diverted away from memory and focus.

20-20-20

Strategies to Clear the Haze

The good news: you can take steps to sharpen your mind and reclaim your clarity, even on foggy days.

1. Brain Games and Cognitive Training
Apps like Lumosity, Elevate, and Peak offer daily exercises designed to improve memory, attention, and problem-solving. Even classic puzzles—crosswords, Sudoku, or word searches—can keep your mind engaged and flexible.

2. The 20-20-20 Rule
Screen time can worsen fatigue and fog. Every 20 minutes, look at something 20 feet away for 20 seconds. This simple trick helps relax your eyes and mind, and can break the cycle of digital overload.

3. Nature Breaks
Research shows that even a five-minute walk outside, or simply gazing at greenery, can reset your focus and reduce mental fatigue. If you can’t get outside, bring nature indoors with houseplants or nature videos.

4. Aromatherapy for Focus
Scents like peppermint, rosemary, and lemon are linked to improved alertness and memory. Use a diffuser, essential oil roller, or even a scented candle to create a brain-friendly environment.

5. Mindful Routines
Start your day with a short mindfulness practice—just five minutes of deep breathing or meditation can help center your thoughts and reduce stress.

6. Nutrition and Hydration
Don’t underestimate the power of a healthy snack and a glass of water. Dehydration and low blood sugar can worsen brain fog. Keep nuts, berries, or yogurt on hand for a quick mental boost.

7. Sleep Hygiene
Prioritize quality sleep by sticking to a routine, limiting caffeine late in the day, and creating a restful bedroom environment. Good sleep is the foundation for mental clarity.

When to Seek Help

If brain fog is severe, persistent, or worsening, talk to your healthcare provider. Sometimes, it’s a sign of medication side effects, vitamin deficiencies, or other treatable issues. Don’t suffer in silence—your clarity matters.

Final Thoughts

Brain fog is real, but it doesn’t have to define your days. With a few practical strategies and some self-compassion, you can sharpen your mind and reclaim your focus—even with CIDP.

Next - something on your gut.

Friendly

🍽️ EXPANDED: Gut Health & CIDP—The Microbiome Connection

You may have heard the phrase “gut feeling,” but did you know your gut health can actually influence your nerves and immune system? The gut-brain axis is a hot topic in medical research, and for people with CIDP, it’s especially relevant.

Why the Microbiome Matters

Your gut is home to trillions of bacteria, viruses, and fungi—collectively known as the microbiome. These microbes help digest food, produce vitamins, and train your immune system. When your microbiome is healthy and diverse, it can help regulate inflammation and even protect nerve health.

What Affects the Microbiome?

  • Diet: A diet rich in fiber, plant foods, and fermented items (like yogurt, kefir, kimchi, and sauerkraut) supports a healthy gut.

  • Antibiotics: While sometimes necessary, antibiotics can reduce beneficial bacteria, so consider taking a probiotic or eating extra fermented foods after a course.

  • Stress: Chronic stress can disrupt the gut barrier and microbiome balance, increasing inflammation throughout the body.

Gut-Friendly Habits for CIDP

  • Eat the Rainbow: Include a variety of colorful fruits and vegetables to feed different types of beneficial bacteria.

  • Try Prebiotics and Probiotics: Prebiotics (fiber-rich foods like garlic, onions, and bananas) feed your good bacteria. Probiotics (found in fermented foods) add more friendly microbes.

  • Hydrate: Water supports digestion and helps maintain a healthy gut lining.

  • Limit Processed Foods: Highly processed foods and excess sugar can feed harmful bacteria and increase inflammation.

The Bottom Line

A healthy gut can support your immune system and may even help manage symptoms of CIDP. Small changes in your diet and daily routine can make a big difference over time.

Next - let’s see about your feet.

Care for them.

🦶 EXPANDED: Advanced Foot Care for CIDP

Living with CIDP means paying close attention to your feet. Nerve damage can lead to numbness, pain, and balance issues, making foot care a top priority.

Why Foot Care Matters

Loss of sensation increases the risk of injuries, infections, and ulcers. Even minor problems can become serious if unnoticed. Proactive foot care can help prevent complications and keep you moving safely.

Advanced Tips for Healthier Feet

  • Daily Inspections: Use a mirror or ask a loved one to help check for cuts, blisters, or color changes.

  • Moisturize Wisely: Dry skin can crack and invite infection. Use a gentle, fragrance-free moisturizer, but avoid applying between the toes.

  • Smart Socks: Look for seamless, moisture-wicking socks to prevent blisters and keep feet dry.

  • Custom Orthotics: If you have high arches, flat feet, or pressure points, ask your podiatrist about custom insoles.

  • Footwear Technology: Some shoes now feature shock-absorbing soles, extra-wide toe boxes, and anti-slip treads—perfect for sensitive or unsteady feet.

  • Toenail Care: Trim nails straight across to avoid ingrown nails. If you have trouble, consider seeing a podiatrist regularly.

  • Sensation Check: Use a feather or cotton ball to test sensation. If you notice changes, let your care team know.

When to Seek Help

If you see redness, swelling, or sores that don’t heal, contact your healthcare provider promptly. Early intervention prevents bigger problems.

Walking with Confidence

With the right care and tools, you can protect your feet and maintain independence—one step at a time.

Wait! More good news.

Our hope.

Late-Breaking Special: New Phase 4 Trial for Smoother IVIg to Vyvgart Transition in CIDP

📰 Announced at the 2025 Peripheral Nerve Society Annual Meeting

A new phase 4 clinical trial is testing a safer, more effective way for CIDP patients to move from IVIg to Vyvgart (efgartigimod). Previously, patients had to stop IVIg and wait for symptoms to worsen before starting Vyvgart—a stressful process. This study, led by Dr. Yessar Hussain, will see if patients can begin efgartigimod just one week after their last IVIg infusion, skipping the risky “washout” period.

How the Study Works:

  • 25 adults with CIDP on stable IVIg can join (some on low-dose steroids or immunosuppressants are eligible).

  • After the last IVIg dose, participants start efgartigimod PH20 SC one week later.

  • The main study runs 12 weeks, plus a 4-week safety follow-up.

  • Main goal: How many patients stay on efgartigimod at 12 weeks?

  • Secondary: Patient-reported outcomes, satisfaction, safety.

Why the One-Week Switch?

  • Waiting too long risks a disease flare; switching too soon could reduce IVIg’s benefits.

  • IgG levels drop by half within 2–4 days after IVIg, so one week may be optimal.

Previous Trials:

  • The phase 3 ADHERE trial showed efgartigimod PH20 SC reduced CIDP relapse risk and had a good safety profile.

Exclusions:

  • Other major medical conditions, cancer, myelopathy, recent use of certain drugs, plasma exchange, or live vaccines.

What’s Next?
This trial could make switching therapies safer and easier for CIDP patients. Results will be closely watched.

Stay tuned to CIDPedia for more updates!

🌍 Resource Roundup: Fresh Tools & Support

Thank you for reading and being part of the CIDPedia community. Here’s to new ideas, shared strength, and a brighter tomorrow!

⚠️ Disclaimer

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.

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.

THANK Y’ALL FOR READING!

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