How IVIG helps me as someone with myasthenia gravis

Note: This column describes the author’s own experiences with intravenous immunoglobulin. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Let’s be real: Living with myasthenia gravis (MG) can be a roller coaster. One day, you’re hunky-dory-peachy-keen, and the next, your muscles decide they’re on strike. Lifting your arms feels like carrying bricks, walking across the room takes serious effort, and let’s not even talk about chewing and swallowing.

If you’ve been dealing with this unpredictable mess, you may have heard of intravenous immunoglobulin (IVIG) therapy. Maybe your doctor mentioned it, or you’ve seen it discussed in MG groups. But what exactly is IVIG, and more importantly, how can it help?

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What’s the deal with IVIG?

IVIG is a treatment made from antibodies found in healthy donor blood. These antibodies are like tiny bodyguards that help keep the immune system in check. With MG, the problem is that our immune system is too active; it mistakenly attacks the proteins that help the nerves and muscles to communicate, resulting in muscle weakness. It’s thought that IVIG helps calm that attack.

The therapy is given through an IV (hence the name), usually over a few hours at a hospital or an infusion center. Some people get it as a one-time treatment during a bad flare-up, while others receive it regularly to keep their symptoms under control. I’m one of those others. I receive IVIG every two weeks.

Now you might be wondering, “How does IVIG actually help my body?” I’m so glad you asked.

There are a few ways IVIG is thought to help people with MG:

1. It fights the “bad” antibodies. In MG, the immune system produces self-reactive antibodies, which cause damage that interferes with muscle function. IVIG floods the body’s system with “good” antibodies that help neutralize the bad ones. Think of it as sending in reinforcements to stop the troublemakers.
2. It calms the immune system. MG is caused by an overactive immune system. IVIG doesn’t “turn off” the immune system, but it can help reduce inflammation and and suppress the attack on our body.
3. It helps prevent a harmful immune response. In MG, when self-reactive antibodies bind to their targets, it can trigger an immune response known as complement activation. This response can make MG symptoms worse. IVIG can help prevent complement activation.

For some people, IVIG starts working within a few days. For others, it takes a few weeks. And unfortunately, it doesn’t work for everyone — but when it does, it can make a big difference. I’m one of the lucky ones. It doesn’t take long for me to start feeling better.

IVIG isn’t a daily medication like Mestinon (pyridostigmine bromide), and, unlike immunosuppressants, it’s generally not used as a long-term treatment. Instead, it may be recommended if someone is having a severe MG flare-up or if other treatments aren’t working well enough. It can also be used as a short-term solution while waiting for other medications to kick in.

Some people, like me, get IVIG every few weeks as part of their regular MG treatment, while others get it only during emergencies such as a myasthenic crisis, when muscle weakness becomes severe enough to affect breathing.

What’s an IVIG infusion like?

The actual infusion process can take anywhere from a few hours to a couple of days. Most people have it done in a clinical setting (I get mine done at a local infusion center), but if insurance allows it, some lucky folks may be able to do it at home with a nurse. The process itself isn’t painful, in my opinion. The IV is placed in your arm or connected to a subdermal port, and then you sit back and wait.

Side effects are usually mild but may include headache, fever, chills, muscle aches, and nausea. Together, these symptoms are often referred to as the “IVIG flu.” Yet again, I admit I’m one of the lucky ones. My only effect from IVIG is the intended result: feeling better.

Drinking lots of water before and after the infusion can help cut down on side effects, especially headaches. More serious reactions are rare, but it’s always good to keep your doctor in the loop if you don’t feel right during or after a treatment.

IVIG isn’t a cure, and it doesn’t work for everyone. But for some MG warriors, it’s a game changer, helping to improve muscle strength, reduce the frequency and severity of flare-ups, and make life a little more manageable.

If your doctor suggests IVIG, it’s worth discussing the pros and cons. Every MG journey is different, and what works for one person might not work for another. But knowing your options gives you greater control.

Living with MG isn’t easy, but having the right treatments and support can make a world of difference. IVIG has been a lifesaver for me and is helping me live my best life.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.