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Chronic inflammatory demyelinating polyneuropathy (CIDP) is not just a complicated medical term; it is a rare disease that can cause sensory loss and severely impact mobility. CIDP illness occurs when an autoimmune response causes the body to attack the myelin or the protective covering of the body’s nerves.
Nerve damage ensues, followed by symptoms that include weakness in the limbs, a loss of sensation and reflexes, and eventually, paralysis if untreated. Although there is no cure, early diagnosis and treatment can help manage symptoms and prevent irreversible nerve damage.
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CIDP is extremely rare, with approximately five to seven out of every 100,000 people diagnosed with the disease, according to RareDiseases.org.
CIDP illness is often confused with Guillain-Barre syndrome (GBS) because of the similarity of symptoms. Both are autoimmune diseases that affect the myelin (an insulating layer or sheath that forms around nerves). However, a significant difference is that GBS symptoms progress rapidly and can reach the most severe state in less than 4 weeks, while CIDP symptoms take longer to manifest.
Since CIDP is a chronic disease, it is not diagnosed until symptoms persist and worsen over a period of 8 weeks or longer.
To diagnose CIDP, doctors will review your medical history and may conduct the following tests:
- Nerve conduction studies and electromyography
- Lumbar puncture (spinal tap)
- Nerve biopsy
- Magnetic Resonance Imaging (MRI)
- Blood Tests
Early diagnosis and treatment can prevent nerve damage and are crucial for successful recovery.
CIDP Treatment Options
Since CIDP illness is an autoimmune disease, the prescribed treatments often work to suppress the immune response that is causing the attack on the myelin.
These treatments can include:
- Corticosteroids: Suppresses the immune system. A typical regimen involves oral prednisone or prednisolone.
- Intravenous immune globulin (IVIG): Infuses antibodies from thousands of healthy donors into the blood of the patient.
- Plasmapheresis: Removes harmful antibodies from blood circulation.
- Subcutaneous immunoglobulin (SCIG): Injects antibodies into the fatty tissue under the skin. Recent studies have shown that SCIG is as effective as IVIG while having fewer systemic side effects.
- Autologous hematopoietic stem cell transplantation (HSCT): Used in severe cases where other immunomodulatory drugs are not effective.
- Monoclonal antibodies: Drugs like Rituximab (Rituxan) are sometimes used for patients who do not respond to first-line treatments.
Doctors may also recommend physical therapy to help improve mobility. Treatment can help increase physical strength, balance, and coordination to improve the quality of life.
In 2024, the FDA approved three new drugs for the treatment of CIDP. These drugs are HYQVIA (used for maintenance therapy), GAMMAGARD LIQUID, and Vyvgart Hytrulo (used by adults). The approval of these drugs offers additional treatment options for those who suffer from CIDP.
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Life Expectancy and Quality of Life
Although CIDP illness is not fatal and the life expectancy of patients is comparable to those without the disease, their quality of life can be significantly impacted.
The longer the disease remains untreated, the greater the risk of permanent nerve damage, which can severely impair sensory and motor functions. If severe nerve damage sets in, patients may require assistance with daily living activities due to a lack of mobility.
Even with an accurate diagnosis and appropriate treatment, some patients may still experience symptoms such as fatigue, pain, or sensory disturbances.
Fortunately, in addition to getting treatment, there are things you can do on your own to make living with CIDP easier, such as:
- Using assistive devices such as canes and walkers to help with mobility
- Maintaining a healthy, balanced diet to get proper nutrients to maintain nerve health
- Getting plenty of sleep to help manage fatigue
- Making home modifications like installing raised toilet seats or grab bars
- Avoiding overexertion and taking frequent rests between activities
- Engaging in light exercise (after consulting your health professional first)
These simple tips can help you manage CIDP while simultaneously receiving medical treatment and physical therapy.
Next Steps
You may want to discuss the possibility of CIDP illness with your doctor if you are experiencing unexplainable numbness or a loss of reflexes in your limbs for a prolonged time. The sooner you identify the disease and begin CIDP treatment, the higher the chance you can reverse symptoms and prevent further damage to your nerves. If you have questions about financial assistance, please contact us or book a call with a specialist.