What to do... if you have age-related macular degeneration?

A printable pdf copy of this article is available here. You can find an Amsler grid for your use here.

You are here probably because you were told you have age-related macular degeneration (AMD) or one of your family members or friends has this condition. A diagnosis of AMD can be anxiety provoking. Patients often worry about going blind and losing their independence.

Here are a few myths about AMD:

• I will go completely blind with AMD

AMD only affects the macula, which is responsible for central vision. Even if AMD becomes severe, it is extremely unlikely for the peripheral vision to be involved.

• Everyone with AMD will lose their central vision

It is true that in advanced AMD, central vision can be damaged. However, AMD does not always progress to the advanced form, and for patients with early or intermediate AMD, their central vision can still be very good. Advanced neovascular AMD can be treated with injections to maintain long-term central vision.

• I can lose my independence with AMD

As mentioned above, AMD does not affect peripheral vision. Even patients with advanced AMD can look after themselves at home, navigate and live independently.

So, what should you do if you have AMD? Here are my suggestions, in order of importance.

Ascertain the type and severity of AMD

It is essential to find out the type and severity of AMD you have, as this will inform prognosis and direct treatments. Early AMD consists of small drusen only. Many cases do not progress, and the visual prognosis is good. Intermediate AMD is when there are numerous medium-sized drusen, large drusen, or pigment migrations. In this stage, visual acuity is often quite good, but the visual prognosis is more guarded. Some patients can progress to advanced AMD, which can be neovascular (wet) or non-neovascular (dry). Anti-VEGF injections effectively treat neovascular AMD, and vision is often stable on treatment. At this stage, non-neovascular (dry) AMD with atrophy is not treatable, but a few agents are under trial for this disorder.

When you see Dr Sheck, he will analyse your OCT and macular imaging in depth. Not only will he be able to inform you regarding the type and severity of AMD, but he will also look for subtle biomarkers to give you more information about your prognosis.

Early and regular treatment saves vision in neovascular (wet) AMD

If you are told that you have neovascular (wet) AMD, there is no time to waste, and treatment with intravitreal anti-VEGF injections must be started as soon as possible to prevent further damage. Many patients find the idea of having eye injections scary, but almost all my patients requiring injections find the procedure comfortable with no problems. You can find further information about intravitreal injection on my website.

The effect of these injections does not last indefinitely, so regular injections are required to maintain vision in neovascular AMD. Even a slight delay in treatment can result in irreversible vision loss in some patients.

Careful monitoring for neovascular transformation

Most patients with AMD do not have the neovascular (wet) form, and thus no injections are required. However, there is a possibility of conversion to neovascular (wet) AMD. Early changes are subtle, and distortion is a crucial symptom. You need to monitor your vision with an Amsler grid, one eye at a time, at least weekly. Amsler grid is available for download here.

Amsler grid monitoring does not detect all cases of neovascular (wet) AMD, and regular imaging with OCT is required in high-risk situations. Dr Sheck can help you risk-stratify your condition and decide how intensive the monitoring regime needs to be.

Lifestyle modification to protect your macula

Around 50% of AMD variability is from genetics, and the rest is from environmental factors. Smoking is one of the strongest risk factors for AMD, and please consider stopping smoking. Otherwise, a good intake of vegetables and fish has been associated with a lower risk of AMD in population studies. However, Omega-3 fish oil has no effect on AMD.

Supplements

For patients with intermediate AMD, supplementation with the age-related eye disease study 2 (AREDS2) formula has been shown to reduce the rate of progression by up to 20\%. The AREDS2 formula consists of 10mg lutein, 2mg zeaxanthin, vitamin C 500mg, vitamin E 400IU, zinc oxide 80mg or 25mg (both work equally well but have fewer side effects with lower zinc), and cupric oxide 2mg. In New Zealand, the following formulations are available.

• Blackmore Macuvision 2 tablets daily and Blackmore Lutein Defence 1 tablet daily. This is available from most pharmacies.
• Macutec tablet, one tablet daily. This is only available online from www.macutec.co.nz
• MDEyes tablet, one tablet daily. This is only available online from www.MDEyes.co.au

If you have early AMD only, lutein and zeaxanthin supplementation can be considered (i.e. one tablet of Blackmore Lutein Defence daily). Lutein and zeaxanthin supplementation has been shown to increase macular pigment levels, which may have a beneficial effect.

Optimise your vision and visual function

Poor contrast and lighting can disproportionately affect the vision of patients with AMD. Good lighting (either artificial light or sunlight) is important when reading. It would help if you were sure your glasses were current. Generally, it would be best to check your glasses once a year to ensure they are adequate.

Early cataract surgery in the setting of AMD can improve contrast and help you with your visual function. When you see Dr Sheck, he will assess your lens and inform you if the cataract is worth removing after considering AMD.

In more severe cases, the involvement of a low-vision expert for optical aids (such as magnifying glasses, telescopes, etc.) can be helpful. In some patients, the Ocutech Biopic lenses restore enough distance vision to allow driving again.

Consider genetics and risks to your relatives

As discussed above, 50% of variability in AMD is due to genetics. It is crucial for you to inform your close relatives regarding your diagnosis, so they can get their eyes checked and treatment initiated if indicated. If you have a strong family history, Dr Sheck can discuss the details of AMD genetics and the available tests. At this stage, routine genetic testing for AMD is not yet indicated.

Stay in touch with the latest research

If you are under the care of a sub-specialist in medical retina like Dr Sheck, you will be kept up to date with the latest research developments. At the time of writing, specific complement inhibitors have been shown to slow down the progression of atrophic non-neovascular (dry) AMD in clinical trials. One of these, Pegcetacoplan, has been approved by the Food and Drug Authority for treating atrophic non-neovascular AMD in the United States. This medication is pending approval in New Zealand.

It is worthwhile to contact Macular Degeneration New Zealand, a patient support group and charity. Its website (mdnz.org.nz) has a wealth of information, and they are very helpful for patients with AMD.

Hopefully you find the information in this leaflet useful. If you still have questions or concerns regarding AMD, please make an appointment with Dr Sheck using the Contact page to discuss further.

About Dr Leo Sheck

Dr Sheck is a RANZCO-qualified, internationally trained ophthalmologist. He combined his initial training in New Zealand with a two-year advanced fellowship in Moorfield Eye Hospital, London. He also holds a Doctorate in Ocular Genetics from the University of Auckland and a Master of Business Administration from the University of Cambridge. He specialises in medical retina diseases (injection therapy), cataract surgery, ocular genetics, uveitis and electrodiagnostics.