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What to Expect with IVIG Treatment for Lambert-Eaton Syndrome (LEMS)
Good morning!
If you or a loved one has been diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), you may have been prescribed Intravenous Immunoglobulin (IVIG) as part of your treatment plan.
IVIG is a therapy that can help improve muscle strength by modulating the immune system and improving neuromuscular function.
Here’s what you can expect from IVIG treatment for LEMS:
What is IVIG?
IVIG (Intravenous Immunoglobulin) is a treatment that involves infusing a concentrated solution of antibodies (immunoglobulins) from healthy donors into your bloodstream. These antibodies help regulate the immune system and can reduce the autoimmune attack on your neuromuscular junction, which is often a cause of LEMS symptoms.
How is IVIG Administered?
IVIG is typically administered through an intravenous (IV) drip at a hospital or outpatient infusion center. The infusion usually takes several hours, depending on the dosage and your response. Most patients receive IVIG treatments on a monthly basis, but the frequency and duration of treatment can vary based on individual needs and doctor recommendations.
The Process of Receiving IVIG:
Preparation:
Before your first infusion, you’ll be asked questions about your medical history, current medications, and any allergies to ensure the treatment is safe for you.
The Infusion:
An IV catheter will be placed in your vein, usually in your arm. The IVIG solution will be slowly infused into your bloodstream. The process may take anywhere from 2 to 6 hours, depending on the dosage and how your body reacts.
Monitoring:
During the infusion, you will be monitored for any side effects. Vital signs like blood pressure, heart rate, and temperature will be checked regularly. Nurses will also be on hand to help you feel comfortable throughout the process.
What to Expect During and After Treatment:
During Treatment:
Most patients feel relaxed during the infusion, though some may experience mild side effects like headaches, fatigue, or nausea.
After Treatment:
You may experience some side effects after your IVIG session. These can include:
Mild flu-like symptoms (fever, chills, headache, body aches), Fatigue or tiredness, Lightheadedness or dizziness
Rarely, more severe reactions such as shortness of breath or chest pain (which is why monitoring is crucial)
Most side effects are temporary and can be managed with hydration, rest, and medications as prescribed by your doctor.
Effectiveness of IVIG for LEMS:
IVIG can provide significant benefits for people with LEMS, especially in terms of improving muscle strength and reducing weakness. Many patients report feeling better within a few days or weeks of starting treatment. However, the response to IVIG can vary between individuals. For some, it’s a highly effective therapy, while others may need additional treatments like steroids, immunosuppressants, or plasmapheresis to manage symptoms.
Long-Term Use:
IVIG treatment is generally considered safe for long-term use, but regular follow-ups with your healthcare provider are important to monitor effectiveness and manage any side effects. Some patients may experience a “plateau” effect, where the benefits of IVIG seem to stabilize over time. In these cases, your doctor may adjust the frequency or dosage of the infusions.
What You Can Do to Prepare:
Hydration: Drink plenty of water before and after your infusion to help prevent side effects like headaches.
Inform Your Doctor of Any Changes:
Be sure to let your healthcare team know if you experience any unusual symptoms during or after the infusion.
Bring Comfort Items:
Since the treatment can take several hours, bring a book, music, or anything that helps you feel comfortable during the infusion.
Support and Aftercare:
Living with LEMS can be challenging, but treatments like IVIG offer hope for improved quality of life.
If you ever feel uncertain or have concerns about your treatment plan, don’t hesitate to reach out to your healthcare team. They can provide guidance, support, and adjustments to help ensure the best possible outcome.
Have you tried IVIG therapy for your LEMS?
If so, what tips do you have for newly diagnosed patients who will be receiving IVIG?
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