About 1 million people in the U.S. live with geographic atrophy. If you are one of them, you may know the challenges that can come with this condition.
Geographic atrophy, or GA, is an advanced form of age-related macular degeneration (AMD). It can cause cells to die in your retina, the layer in your eye that detects light. Over time, GA can lead to permanent central vision loss.
Thankfully, there are treatments for GA. Two medicines, avacincaptad pegol (Izervay) and pegcetacoplan (Syfovre), can slow GA’s progression by 14% to 20%.
Although the medications can slow your vision loss, about 1 in 4 people with GA quit taking the shots within six months of starting them, one study found. And almost half – nearly 45% – quit by 18 months.
“It’s hard; these are difficult treatments and they do have some side effects,” says Raj K. Maturi, MD, a clinical spokesperson for the American Academy of Ophthalmology and an ophthalmologist at Midwest Eye Institute in Carmel, Indiana.
It is important to continue GA treatment to slow disease and potentially prevent vision loss. Here are some of the main reasons GA treatment is stopped, and advice on how to stick to your treatment plan.
How GA Medications Work
Both of the GA medicines are a type of medication known as complement inhibitors. The complement pathway is part of your immune system.
“It’s designed to fight viruses or bacteria, or help tissue heal after an injury,” says Richard B. Rosen, MD, chief of retinal services at the New York Eye and Ear Infirmary of Mount Sinai in New York City.
It’s thought that people with GA may have an overactive complement system that destroys retinal cells, Rosen says. Izervay and Syfovre block parts of the complement system that cause GA.
The medications are injected directly into your eye either once a month or once every other month. While they both work to calm your immune system’s response, the two medicines target different immune molecules.
Why People Stop GA Treatment
There are a few reasons why you might be tempted to stop your GA treatment. These include inconvenience, unclear benefits, side effects, and lack of knowledge about how the treatments work.
Inconvenience
Your vision can blur after getting the shot. So you may need to ask someone to drive you to and from your appointment. This may be a challenge, especially if you live far from your ophthalmologist’s office.
Rosen says he has patients who have to travel two or three hours to get to his offices in New York.
“They need someone to accompany them – usually it’s their partner, or their adult children,” he says. “That means they or their loved one have to take time off of work and other responsibilities once a month.”
Immediate side effects
It’s not fun to get an injection right into your eye. While your doctor will numb your eye before your shot, you may have concerns about a needle going directly into your orb.
The medications can also cause eye issues for a few days after each injection.
“The medicines we use for GA are very viscous, or thick, so they can make it hard to see for a few days after treatment,” says Rosen.
Some people may also be extra sensitive to light or notice blurred vision. You may have some discomfort for a few days, too.
“We inject a relatively large amount of medication, so it can be uncomfortable until the medicine is fully absorbed into your eye,” Maturi says.
But your retina specialists often can help. They can counter these effects by doing a harmless procedure called paracentesis. It removes some fluid from the front of your eye before your injection quickly replaces the fluid, returning the pressure inside your eye to normal.
Most doctors also suggest artificial tear drops after your injection. These can help keep your eye lubricated. This can help ease any discomfort in your eye over the next several days.
Misunderstanding treatment
When you spend a lot of time and energy to go get your injection and your vision doesn’t get any better, you may feel frustrated. Understanding the key reasons for GA treatments is important.
“The [treatments] aren’t meant to improve your eyesight – they are done to prevent it from getting worse,” says Rosen. “They slow down the rate at which your GA advances.”
Rosen says that for most people, vision changes aren’t noticeable at all after treatment.
“But over time, your vision loss will still progress,” says Rosen. “The hope is that the injections slow that rate of progression down.”
Maturi says that hopefully, future medications will emerge that are able to reverse some of the vision loss with GA. Even medications that can slow the condition down more dramatically.
In the meantime, “whatever we can do to treat your GA and keep it from getting worse is critical,” says Maturi.
GA Treatment Complications
Like any other treatment, GA injections do carry a risk of complications.
Here are some of the most common:
Infection. Any time you inject a substance into your eye, you run the risk of infection.
“As eye doctors, we take every step that we can to reduce the chance of an infection, including the use of antiseptics to clean your eye’s surface,” Rosen says. “But there is a small chance you’ll get an infection, especially if you have other risk factors that make you more prone to them, like type 2 diabetes.”
If you get any symptoms, such as the ones below, within 24 hours to a week after your injection, call your doctor right away:
- Pain
- Redness
- Unusual loss of vision
Wet AMD. About 5% to 10% of people who get GA injections for a year develop another form of age-related macular degeneration called wet AMD. Wet AMD also leads to central vision loss and requires treatment with another type of injection called anti-VEGF medications.
Vasculitis. This is an inflammation that may block blood flow to your retina. It can cause you to go permanently blind. It’s very rare and occurs in about 1 in 10,000 injections.
It’s always important to talk about the pros and cons of treatment with your eye doctor, says Rosen. But he says retina specialists will only recommend treatment when the benefits of these injections outweigh potential risks.
Why It’s Important to Talk to Your Doctor
If you feel like it’s hard for you to stick to your GA treatment plan, let your doctor know. There may be things they can do to help make the process easier.
“Oftentimes, if a patient travels a distance to see me, I’ll help them find a local eye specialist near them who can do the monthly injections,” says Rosen.
You may also be able to request the first appointment of the day, says Maturi.
“If you can get your injection early in the morning, or get the first appointment right after lunch, you should be able to be seen right away rather than having to sit for hours in the waiting room,” he says. “You shouldn’t have to wait as long as other patients who require full eye exams.”
If you find injections painful or uncomfortable, let your doctor know. They may be able to increase the amount of anesthetic they use to numb your eye or switch to a different numbing medicine, says Maturi.
If you just feel nervous, these strategies can help:
- Hold someone’s hand during the injection.
- Squeeze a stress ball.
- Listen to soothing music.
In rare cases, your doctor may prescribe anti-anxiety meds for the day of your injection.
If you are concerned about complications, your doctor may be able to ease your mind.
“These remain very rare, and if you let us know right away, we can swoop in to prevent long-term damage,” says Rosen. “When in doubt, get it checked out.”
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Raj K. Maturi, MD, ophthalmologist, clinical spokesperson, American Academy of Ophthalmology, Midwest Eye Institute, Carmel, Indiana.
Richard B. Rosen, MD, ophthalmologist, chief of retinal services, New York Eye and Ear Infirmary, Mount Sinai, New York City.
American Macular Degeneration Foundation: “Geographic Atrophy.”
American Academy of Ophthalmology: “What to Know About Syfovre and Izervay for Geographic Atrophy,” “New Geographic Atrophy Drugs: The Good, the Bad, and the Unknown.”
Retinal Physician: “Who Stops GA Therapy—and Why.”
Macular Society: “Pain in the Eye Following Intravitreal Injections.”
Retina Today: “SYFOVRE: Insights on Case Reports of Retinal Vasculitis and Removal of 19-Gauge Filter Needle.”
Ophthalmology and Therapy: “Strategies for Improving Patient Comfort During Intravitreal Injections: Results from a Survey-Based Study.”
Cleveland Clinic: “Geographic Atrophy.”
Biopharma PEG: “Complement Inhibitors as Therapeutic Agents.”
