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I strongly believe that the most important part of managing any stage of age-related macular degeneration (AMD) is patient education. If doctors do not provide quality AMD education, patients are left to search the internet to fill in the gaps for themselves, which can cause anxiety and fear. They also are not aware of the lifestyle changes they could make to mitigate the risks of disease progression.
I have found that this explanation resonates most with patients:
AMD is a disease process of the transport system between healthy retina tissue on top and the vasculature underneath that supplies its nutrients. The first visible sign of AMD is drusen, which are waste deposits made by the retina cells. Cellular waste is typically pushed into the vasculature and eliminated, but when this transport system doesn’t work well, that waste builds up in the macula over time and forms drusenoid deposits.
While drusen are visible findings in AMD, it is the lack of nutrient inflow that ultimately damages vision. Two options happen in advanced stages of AMD because of this nutrient deficiency:
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- The cells that give us vision die off over time and the area atrophies, causing blind spots in the center of our vision. This is geographic atrophy (GA).
- When the macula recognizes the nutritional deficiency, it tries to grow new blood vessels to circumvent the problem. Unfortunately, these new blood vessels are weak. They leak and can deteriorate vision quickly. This is wet AMD. You can have GA and wet AMD at the same time.
I have found this explanation provides a great foundation for discussing healthy lifestyle changes that help patients mitigate their risk of disease progression. These changes include no smoking, a healthy diet, exercise, supplementation, control of comorbid conditions and regular in-office follow ups. The earlier we start these interventions, the longer we have to mitigate risk, which is why extensive education is needed in all stages of AMD.
Some patients will progress to advanced AMD anyway, regardless of these interventions. I start discussing the concept of geographic atrophy when patients start complaining about general deterioration to their vision while their visual acuity is stable, and I see worsening hypertransmission defects or iRORA (incomplete retinal pigment epithelium and outer retina atrophy) on OCT.
Once I find cRORA (complete RPE and outer retina atrophy) on infrared imaging, fundus autofluorescence, OCT or some combination of modalities, I diagnose GA and talk about that diagnosis with patients. I explain that GA is cell death that causes a blind spot in a specific area of the macula, and it is likely to grow in size as the disease progresses. I continue to discuss the importance of lifestyle changes; namely a healthy diet and AREDS2 supplementation, which have been shown to slow the rate of GA growth.1,2
There are also two FDA-approved intravitreal drugs that slow the rate of GA progression. As with any treatment plan, I explain the risks, benefits, alternate therapies and limitations. Like most intravitreal injections, there is a risk of infection and intraocular inflammation. Both medications have shown a slightly higher chance of developing wet AMD. Time and potential financial commitment needed for these monthly or every-other-month treatments can also be a concern, especially because they will likely last for years.
I am also explicit about the limitations of these drugs: They do not regain vision loss, nor do they repair cells that are already impacted. Again, once macular cells are dead, they cannot be regenerated. There are also no alternative therapies currently. My goal in recommending these drugs is to slow progression to keep enough functional vision and viable macular cells for future treatment development. The amount of research into AMD is expansive and, like photodynamic therapy for wet AMD, complement cascade inhibition therapy is a precursor to something better.
Explaining complement cascade inhibition therapy this way has been effective in helping my patients understand the potential benefits of treatment while understanding its risks and limitations so they can make the best decision for their individual vision and quality of life.
References
- Agrón E, Mares J, Chew EY, Keenan TDL; AREDS2 Research Group. Adherence to a Mediterranean diet and geographic atrophy enlargement rate: Age-Related Disease Study 2 Report 29. Ophthalmol Retina. 2022 Sep;6(9):762-770. doi: 10.1016/j.oret.2022.03.022
- Keenan TDL, Agrón E, Keane PA, et al. Oral antioxidant and lutein/zeaxanthin supplements slow geographic atrophy progression to the fovea in age-related macular degeneration. Ophthalmology. 2024 Jul: S0161-6420(24)00425-1. doi: 10.1016/j.ophtha.2024.07.014