Does Rystiggo Cure Myasthenia Gravis? Plus Answers to 6 Other Rystiggo FAQs

Picture this: your muscles stop working the way they should. That’s the reality for people with myasthenia gravis (MG), an autoimmune condition. 

If you have MG, you may feel like your muscles are always running on empty. At times, simple activities such as chewing and talking might feel like climbing a mountain. These symptoms happen because of communication problems between the nerves and muscles. But certain medications can help with this. 

Rystiggo (rozanolixizumab-noli) is a medication used to treat adults with generalized myasthenia gravis (gMG) who are considered anti-AChR (acetylcholine receptor) or anti-MuSk (muscle-specific tyrosine kinase) antibody positive. Rystiggo helps your nerves and muscles work together to improve muscle-related symptoms and quality of life.

If you’re just starting Rystiggo, it’s normal to have questions about how it works and when you can start expecting improvements in your symptoms. Here, we’ll answer these and some other top questions asked about Rystiggo so you can feel prepared for your treatment.

1. Does Rystiggo cure myasthenia gravis?

No, there is currently no cure for MG. But the good news is that there are treatments that can improve symptoms and make life a little easier. In clinical studies of people with MG, Rystiggo improved muscle function needed for breathing, talking, and swallowing. 

EXPERT PICKS: WHAT TO READ NEXT

• How to spot symptoms: Myasthenia gravis typically starts off slowly, and early symptoms can be hard to notice. Find out what to look for so you can start treatment sooner.

• What to expect: One woman who experienced a myasthenia gravis diagnosis shares her advice for living with the condition.

• Know your options: Here are two more myasthenia gravis medications that can help relieve symptoms and improve quality of life.

2. How does Rystiggo work?

To understand how Rystiggo works, it’s helpful to know how muscles work.

Your brain communicates with muscles by sending messages through your nerves, although there isn’t a direct link between them. This communication delivery happens in the space between the nerve and muscle, known as the neuromuscular junction. First your brain tells your nerves to release a chemical called acetylcholine (ACh). Then, ACh binds its receptors (binding sites) in muscle cells, which causes your muscle to contract.

MG can happen when your body makes harmful antibodies, such as anti-AChR or anti-MuSk. These antibodies are harmful because they block or damage ACh receptors, which in turn disrupts communication between nerves and muscles. This explains why muscle weakness and fatigue are common MG symptoms.

Rystiggo works by blocking the neonatal Fc receptor (FcRn) — a special protein that helps antibodies stay in your system longer. So if you have MG, Rystiggo can reduce the amount of harmful antibodies in your body so your muscles work better.

3. How often is Rystiggo administered?

You’ll receive Rystiggo in treatment cycles. One cycle includes a once-weekly dose over a 6-week span. After your first cycle, you’ll take a break before starting your next cycle. The length of your break may vary based on your symptoms. But the safety of cycles spaced closer than 9 weeks — from the start of one cycle to the start of the next — hasn’t been studied.

Studies have shown that people usually receive an average of 4 to 5 cycles per year, with at least 2 months between cycles.

4. Can you administer Rystiggo at home?

Rystiggo is given as a subcutaneous infusion, which involves inserting a needle just under the skin in the lower stomach. Most people receive Rystiggo at an infusion center. However, depending on your insurance coverage, you may have the option to receive it at home with the help of a nurse or another healthcare professional (HCP). 

The medication is dosed based on your body weight. Each infusion takes around 15 minutes to receive. But these infusion times can vary based on your dosage or HCP’s location. During the infusion, you’ll also be closely monitored for symptoms of an allergic reaction — both while receiving it and for 15 minutes afterward.

Good to know: It’s important to wear comfortable, loose-fitting clothing on the day of your Rystiggo infusion. This will allow your HCP to have easy access to your stomach for the infusion. You’ll also want to let the HCP know if you’re sick on your infusion day. They may want to delay your infusion until after you feel better.

5. When will Rystiggo start working?

There’s no uniform answer for this. Everyone’s experience with MG, and Rystiggo, is unique. Some people report noticing symptom improvement as early as 1 week after their first Rystiggo dose. Others notice improvements at the end of their first 6-week treatment cycle. Timing aside, most people saw improvements in their breathing, swallowing, talking, and ability to stand up from a chair.

Not all people who take Rystiggo will see improvements though. Talk to your HCP if you haven’t noticed any symptom improvements after your first treatment cycle.

6. What are the potential side effects of Rystiggo?

Like all medications, Rystiggo can cause side effects. Some are mild, while others are more serious. 

Common side effects

The most common and mild Rystiggo side effects include:

• Injection site reactions

• Headache

• Diarrhea

• Nausea

• Stomach pain

• Joint pain

Injection site reactions happen with many injectable medications, including Rystiggo. They typically occur within 1 to 3 days of your infusion. Most reactions are mild and include symptoms such as redness, pain, or swelling at the injection site. But if your injection site reactions are bothersome and your symptoms don’t go away within a few days, contact your HCP.

Serious Rystiggo risks and side effects

The following risks and side effects are more serious and should be reported to your HCP immediately.

Serious allergic reactions

Rystiggo can cause allergic reactions within 1 day to 2 weeks after your last infusion. You may only have mild symptoms, like a local rash. But more serious reactions are also possible. Watch out for symptoms such as trouble breathing, a widespread rash, and swelling of the face or mouth. If you notice any of these, call 911 or get medical help right away.

Infections

Rystiggo affects your immune system, so it can increase the risk of infection. Before starting Rystiggo, tell your HCP if you feel sick or experience symptoms such as fever, chills, or sore throat. They may want to delay your next dose of Rystiggo until you’re feeling better.

Remember: Whether it is safe to receive vaccines during Rystiggo treatment hasn’t yet been studied. To be safe, you should avoid receiving vaccines while taking Rystiggo. This is because of how Rystiggo affects the immune system. Your HCP can help you plan the timing of vaccines they recommend for you around your treatment cycles.

Brain inflammation

Although rare, Rystiggo can increase the risk of aseptic meningitis — a life-threatening condition where the protective covering of the brain becomes inflamed.

Let your HCP know immediately — during or after Rystiggo treatment — if you develop a severe headache or neck stiffness, especially if you also have a fever. Nausea and vomiting, sensitivity to light, and extreme drowsiness can also occur. Getting treatment right away is crucial. So to be safe, discuss any of these symptoms with your HCP.

7. Is it safe to take Rystiggo while you’re pregnant?

Probably not. Rystiggo hasn’t been studied extensively during pregnancy, so the potential risks aren’t fully known. But animal studies suggest fetal harm is possible. And we also don’t know if Rystiggo is safe while nursing.

If you’re pregnant, trying to become pregnant, or are nursing, make sure to tell your HCP. They’ll most likely prescribe a different medication for you out of caution. 

How to save on Rystiggo

There are ways to save on Rystiggo, which is only available as a reference (brand-name) medication. GoodRx can help you navigate between copay savings cards and patient assistance programs to save money on your prescription.

• Save with a copay savings card. If you have commercial insurance, you may be eligible to pay as little as $0 for Rystiggo using a savings card from the manufacturer.

• Save with patient assistance programs. If you’re uninsured or underinsured, you may be eligible for Rystiggo’s patient assistance program, which offers the medication free of charge for up to 1 year.

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Written by:

Nikki Javit, PharmD

Nikki Javit, PharmD, is a clinical pharmacist with certifications in international travel medicine, immunization delivery, and pharmacogenomics. She received her bachelor’s of science in biology from Indiana University Bloomington and her doctor of pharmacy degree from Butler University.

Edited by:

Joshua Murdock, PharmD, BCBBS

Joshua Murdock, PharmD, BCBBS, is a licensed pharmacist in Arizona, Colorado, and Rhode Island. He has worked in the pharmacy industry for more than 10 years and currently serves as a pharmacy editor for GoodRx.

Reviewed by:

Daphne Berryhill, RPh

Daphne Berryhill, RPh, has two decades of experience as a clinical pharmacist. She spent most of her career in the Chicago area practicing in-home infusion.

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