Infused with Hope: Myasthenia Gravis Patients Thrive with IVIG Therapy

Most of us have experienced muscle fatigue at one time or another. When we do, we often dismiss it, thinking our neck, arms or leg muscles feel heavy and tired because we wore ourselves out gardening, overdid it on the golf course, got carried away rough housing with the grandkids, or some other activity. With a little rest, we fully expect to feel back to our old selves in the next day or so.  

Still, for a growing number of Americans affected by myasthenia gravis, weak and tired muscles just happen to be a telltale symptom of a complex health condition. And that’s why myasthenia gravis (MG) can be hard to diagnose. People in the early stages of the disease who experience fatigue can feel fine after a few days of rest and have no idea they are dealing with the onset of MG. It’s only as the disease becomes progressively worse that the reality of their condition becomes clear.   

What exactly is myasthenia gravis?  

MG is a rare neuromuscular, autoimmune disorder that has been around for a very long time. It was first documented in 1672 by an observant physician in Oxford, England. Dr. Thomas Willis noted, “a prudent and honest woman with fluctuating muscle weakness, not only in the members, but also in her tongue.” Fluctuating muscle weakness, including weakness of the tongue, are considered hallmarks of the condition. Even with Dr. Willis’ early discovery, it wasn’t until the late 19th century that the affliction was fully understood by other physicians.   

“Today, we understand that myasthenia gravis is a condition that is triggered when the body’s immune system attacks itself and disrupts normal muscle function,” explains Erin Duvall, RN, a clinical nursing coordinator at AOM.  

In a healthy immune system, impulses travel from the brain to nerves that signal our muscles to move. With MG, these impulses are blocked by rogue antibodies before they can reach the muscle. As a result, one or more body functions critical for everyday living are derailed. Along with causing extreme weakness in the arms, hands, and legs, myasthenia gravis can impair an individual ability to see, walk, breathe, swallow, talk, smile and more. Not all patients display all MG symptoms. Some may only experience a few, others may grapple with several debilitating symptoms. A 2024 study published in Neurology, reveals that roughly five individuals per 100,000 people — about 116,255 patients — currently live with MG in the United States. 

Both men and women are affected by MG, and it diagnosed in people of all racial and ethnic groups. While it most commonly impacts adult women under 40, and men over 60, it can occur at any age, including childhood.  

No cure doesn’t mean no hope. 

Although there is currently no cure for MG, there are many effective treatments to control symptoms during flareups and improve muscle strength. Treatment may even delay or prevent flareups to extend the amount of time patients feel well and can enjoy normal activities.  

“Every case of myasthenia gravis is unique, so treatment is prescribed based on the specifics of each patient’s MG and their response to it,” Duvall says. “Every patient is different and their body will likely respond differently to various treatments. If one treatment isn’t effective, there are many other options we can try.” 

Treatment may include one or more of the following: 

Medications  

• Anti-acetylcholinesterase (AchE) agents to inhibit the AchE enzyme and help improve nerve transmission.

• FcRN blockers to reduce the levels of IgG antibodies that cause autoimmune diseases.

• C5 Protein Inhibitors to control the overactivity of the complement system (part of the immune system that plays a role in fighting infections and inflammation) which can lead to the destruction of healthy cells at the neuromuscular junction.

• Steroids to block the immune system and make it less able to produce antibodies.

• Immunosuppressants to change the immune system so it doesn’t attack itself. 

Intravenous Therapy 

• Intravenous immunoglobulin (IVIG) therapy to provide the body with healthy antibodies that can alter the immune systems response to prevent it from attacking the body.

• Plasmapheresis to filter the blood and remove antibodies that block transmission of signals from the nerve endings to muscles (often used in an emergency situation).

Surgery 

• Thymectomy to remove a tumor (thymoma) in the thymus or an otherwise unhealthy thymus if it is contributing to a patient’s MG. 

IVIG helps countless MG patients. 

For patients in the throes of an MG crisis, IVIG therapy can alleviate severe weakness or difficulty breathing. “IVIG is used to provide healthy antibodies the patient’s body no longer makes. These healthy antibodies help regulate the immune response and reduce the production or activity of harmful antibodies that attack the nerve impulse receptors that signal muscles,” Duvall adds.  

Healthy antibodies are acquired through donations of whole blood and plasmapheresis — the liquid part of blood that contains antibodies and proteins. “It takes between 1,000 to 60,000 donations to collect enough antibodies for just one treatment,” Duvall reveals. “Donors must be from the United States, and are carefully screened in advance. Each must meet strict criteria, complete an in-depth questionnaire, and undergo a physical examination. The rigorous screenings and regulations are designed to protect our patients.” 

“IVIG is a trusted medication that is tolerated with minimal side effects by most people. There is no concern regarding long-term adverse events such as immune suppression, cardiac or neurological effects,” Duvall says. “Most clients in an MG crisis experience fast relief — usually within two weeks. Most clients are back to their baseline and able to continue their normal activities within two weeks. Sometimes it’s used to give a quick boost to a patient who is receiving one of the other therapies and just needs a little extra help. It can also be used when other treatments are not tolerated or working.”  

AOM patients are happy to share the remarkable difference IVIG therapy has made in their lives.  

“It’s been a Godsend for me,” writes one AOM patient in Kentucky. “I went from being dang near paralyzed to dang near normal. I will be the spokesperson for IVIG, it’s been a wonder drug.”  

“My son has been receiving IVIG for a year now,” writes one North Carolina mom. “This medicine has made all the difference in his physical and emotional health. AOM has been the biggest blessing through all of this.”  

AOM has exceptional expertise with IVIG therapy. 

As a leader in infusion therapy for more than 30 years, MG patients can take comfort knowing their IVIG therapy will always be administered by a highly skilled, high-tech specialty infusion nurse. “Every member of AOM’s specialty nursing team is best in class,” Duvall reveals.  

“Many hold specialty certifications, including Certified Registered Nurse Infusion (CRNI) and Immune Globulin Certified (IGCN). They participate in rigorous ongoing education, seminars and conferences hosted by the Infusion Nurse Society and the Immunoglobulin National Society (IGNS). They also have access to a variety of resources to help them stay up-to-date on new research and ways to infuse IVIG in the safest, most appropriate way.” 

This deep expertise and commitment to education allows AOM nurses to provide IVIG therapy with minimal side effects and quickly recognize any symptoms that need to be addressed immediately to prevent severe reactions.  

“AOM infusion nurses are not only very knowledgeable about IVIG and all the medications they administer, they also know a tremendous amount about the MG disease process,” Duvall says.  

Most MG patients receive a large IVIG dose that is administered over several days.  

“While every infusion has a risk of causing unpleasant side effects such as headache, fatigue, or rash, we try to prevent side effects by infusing IVIG therapy slowly and providing pre-medications if needed that help minimize the risk of side effects,” Duvall adds. “We do enlist our patients’ help by asking them to stick to a healthy diet and drink at least 64 ounces of fluids (water is best, alcohol should be avoided) for several days before their infusion. They should also have migraine medication on hand if they are prone to migraines. 

The joy of living more fully. 

Because IVIG therapy works so quickly, MG patients are able to enjoy life with fewer flareups and fewer disruptions to their everyday activities due to symptoms. They can receive treatment in their home or in an AOM Infusion center without having to be hospitalized for several days. This is important when you have a disease that cannot be cured, but want to maintain a fairly normal lifestyle with minimal interruptions and without concerns that often accompany other treatments. 

We help patients reclaim their personal agency.  

At AOM, we understand being diagnosed with myasthenia gravis or any chronic, debilitating disease can be devastating and overwhelming. That’s why we are honored to help give power back to our patients.  

“We don’t simply administer IVIG therapy,” Duvall says. “Yes, we absolutely provide patients with the best care during their infusions, but we also teach them about their disease process. We educate them about their medications and its side effects. We coach them on how to talk to their doctors to get answers and understand all their treatment choices. Most of all, we teach patients and their caregivers how to be advocates for the patient. Over the years, we’ve found this is what our patients appreciate most — knowing they are number one in the care they deserve. That’s how we’ve always worked at AOM, and it’s the way we always will.” 

Trent, an active father and accomplished para-athlete has been an AOM patient for over six years. “With my neuromuscular conditions, autoimmune issues, and a T-10 injury on top of it all, I was still very much in the throes of depression when AOM came along,” he remembers. “I wanted to be the best possible dad to my kids, but I couldn’t go outside and play with them in the same way. I couldn’t pick up my daughter and hold her when she’d run to me. I couldn’t play soccer with my son — and that really wore on me. When I first started doing infusions with AOM, it went from your typical nurse-patient relationship to having an extended family.  

“Their communications style isn’t to tell you, ‘This is how it’s done.’ Instead, it’s ‘What can we do for you? How can we make this better? How can we help?’ Sometimes you feel like you’re in a think tank focused on how to make your life better. I’ve never experienced anything like AOM. Their immediate and constant plan is, ‘What can we do for you to make your life less disrupted and more complete and more encouraging?’ The treatments have changed my life.” 

Patients like Trent truly illuminate in living, breathing form AOM’s core mission: Provide an exceptional patient experience that improves health and enhances quality of life through an unwavering commitment to clinical excellence and personalized infusion care. 

Want to know more about the way IVIG therapy is helping MG patients? Call us at 800-746-9089 to speak with a member of our patient care team.