Anti-VEGF treatments are a group of medicines which reduce new blood vessel growth or oedema (swelling). They can be used to treat a number of eye conditions which cause new blood vessel growth or swelling under the macula area of your retina.
We would like your views on our information about anti-VEGF treatments (injections) so that we can make this information as helpful as possible for other people going through the same treatment.
We are looking for people:
If you are willing to answer a few questions (either over the phone or by email) about what information would have been most helpful to you about these treatments, then we would like to hear from you.
To find out more please contact the RNIB Eye Health Information service on 020 7391 3299 or by emailing [email protected].
Currently anti-VEGF treatment is used for:
New blood vessel growth and macular oedema can also occur in other retinal conditions, so in the future anti-VEGF medications may be used in a wider range of situations.
Anti-VEGF treatments are given by an injection into the eye and work by reducing the growth of new blood vessels and the oedema (swelling) they may cause. Doing this can reduce the risk of scarring and damage to the retina caused by these new vessels, which in turn can help to avoid further sight loss and for some people cause an improvement in vision.
The term "anti" means against and "vascular" refers to blood vessels. Anti-VEGF stands for "anti vascular endothelial growth factor". These drugs work by stopping a protein called vascular endothelial growth factor (VEGF) produced by cells in the retina from working.
New blood vessel growth is a major problem which occurs in a number of eye conditions. VEGF promotes blood vessel growth in the body. Anti-VEGF drugs can interfere with this process, reducing new blood vessel growth and slowing down any leakage or swelling these new blood vessels may cause. This in turn can help to slow down or hold back any loss sight you may experience.
Depending on the condition you have your ophthalmologist will perform tests to decide whether or not treatment with anti-VEGF medication is right for you and your condition.
After examining your eye, the consultant may undertake further tests to give them a clearer picture or your eye and your symptoms. The common tests used to assess the state of your retina are:
For this examination the ophthalmologist uses a microscope so that they can see the surface of your retina by looking through your pupil. Usually you will have your pupils dilated for this test. The ophthalmologist will use the microscope to view your retina and is able to see any changes your condition has caused.
A fluorescein angiogram test provides a picture of the layer of blood vessels underneath your retina. Your ophthalmologist is then able to tell how your condition is affecting this layer of blood vessels. This test uses a dye injected into your arm which travels to the blood vessels in your retina. While the dye is travelling through the blood vessels under your retina a series of photographs are taken with special equipment. These photographs will show your ophthalmologist where the areas of leaking blood vessels are located. Your skin and urine may look orange for a few hours after having this test. Rarely some people can have an allergic reaction to the dye being used but your doctors should have the equipment in place to treat this if this occurs.
This non-invasive test is able to produce an image which shows the layers of your retina around the macula area. This test can be very useful at showing swelling in your macula. It can also be used to compare your macula before and after treatment to make sure that the treatment has been effective in reducing the amount of swelling.
These tests may change or extra tests may be performed depending on the condition you have. Your ophthalmologist will be able to tell you which tests you need so they can manage your care.
Anti-VEGF drugs are given as an injection into the vitreous (the jelly-like substance inside your eye). The injection is given through the white of your eye (the sclera). The injection needs to be given in a sterile way and you may have the treatment in an operating theatre, though more commonly it may be given in a room which has been designed for this type of treatment (sometimes called a clean treatment room).
The needle used for the injection is small and short and the injection itself only takes a few seconds. As you will have had an anaesthetic drop in your eye the injection feels like a small point of pressure on your eye rather than a scratch. The following are basic steps for giving an anti-VEGF injection; however, your hospital may have their own procedures:
After your injection your vision may be blurry for several hours because of the dilating eye drops; this should improve by the next day or the day after. The white of your eye may be red where the injection was given but that should disappear in a few days. You may notice black swirls in your vision for a few weeks (this is the drug floating which you can notice in your vitreous gel). Your eye should feel comfortable by the next day. You may be given some eye drops to take for a few days after the injection to prevent you developing an infection.
For more information on what it is like to have an anti-VEGF injection, watch our video which features Reg talking about having his anti-VEGF injections.
The risk of complications from the anti-VEFG injections are small, most of these are due to the having an injection into your eye.
What ongoing tests are done?
After your treatment your ophthalmologist will order more tests which normally take place on a different day than your injection. These may include a fluorescein angiogram and another OCT test. Both these tests will show how much effect your anti-VEGF treatment has had on new blood vessel growth and the swelling this causes around your macula. Your visual acuity (how well you can see) will also be tested, usually by reading down an eye chart.
A combination of your visual acuity results (how well you can read down the chart) and the signs of swelling shown by the tests, will help your ophthalmologist to decide whether you need more anti-VEGF injections over the coming months.
How often you need to have the injections as well as the pattern of when you have your treatments will depend on how well the treatment is working and on the eye condition you have.
Usually you will start your treatment by having three injections once every four weeks; this is known as a loading dose. The ophthalmologist will then use the results of your ongoing tests to decide when you need more injections. Some people may need to have an injection once a month on a regular basis until the bleeding and swelling are brought under control and their sight stabilises. Other people may have months when they don't need any treatment and their injections are more spaced out over the year. Most people who are being treated with anti-VEGF for wet AMD should have a monitoring appointment at their hospital clinic once every month but some anti-VEGF treatments require two-monthly visits rather than monthly visits. Your ophthalmologist can explain the different anti-VEGF drugs available.
Again you may start with a loading dose of anti-VEGF treatment of three injections over three months. You ophthalmologist will then determine how well you are responding to the treatment by the results of your tests. They may want to see you fairly regularly at the hospital for the first six months and then perhaps less so for the next 12 months. You must be seen earlier if you notice a change in your vision.
You will usually have a loading dose of three or four injections over a period of 3-4 months. You may then have to visit the hospital at monthly intervals for monitoring and treatment if needed. Your ophthalmologist will use the results of your tests and any changes or improvement in your vision to decide whether you need treatment or not.
Because the treatment with anti-VEGF treatments for macular oedema caused by retinal vein occlusion and diabetes is a fairly new development, the timings and frequencies of your injections and how often hospital visits need to take place isn't fully agreed on as yet. However for anyone having anti-VEGF treatment it is usually necessary to have frequent check-ups at the hospital to ensure that there is no deterioration in vision between treatments.
Anti-VEGF treatment has made a significant impact on the vision and lives of people affected with these conditions. In the case of wet AMD the treatments have stabilised the sight in over 90 per cent of cases and resulted in significant improvement in up to 30-40 per cent of people. For people with macular oedema following retinal vein occlusion, improvement was seen in around 60 per cent of people and for people with diabetic macular oedema improvements were seen in around 30 per cent of people.
Since the use of anti-VEGF treatments for conditions other than wet AMD is fairly new, more evidence should become available about how effective a treatment it is for these conditions.
Although anti-VEGF can mean a lot of treatment and visits to the hospital for you, studies have suggested that it is the best treatment available for these three conditions. You should ask your ophthalmologist what they expect the outcome to be for your particular case, as they will be able to take into account your individual circumstances and eye condition.
There is interest in using anti-VEGF treatments for other eye conditions which cause new blood vessels, bleeding and swelling at the back of the eye as these symptoms are common across many eye conditions which affect the retina. At the moment anti-VEGF treatments are only available on the NHS for the three conditions discussed here. However some ophthalmologists may be able to use these treatments on other eye conditions, either privately or on the NHS if they are able to obtain the funding.
Your ophthalmologist should be able to discuss with you whether your condition can be treated with anti-VEGF treatments and let you know whether they will be able to obtain funding for your treatment. If you have any difficulties with obtaining funding then RNIB may be able to help with some advice and it may be worth you contacting us and discussing your situation.
Being diagnosed with an eye condition can be very upsetting. You may find that you are worried about the future and how you will manage with a change in your vision. All these feelings are natural.
Some people may want to talk over some of these feelings with someone outside their circle of friends or family. RNIB can help, with our telephone Helpline and our emotional support service. Your GP or social worker may also be able to help you find a counsellor if you think this would help you.
The Macular Disease Society has local groups which meet throughout the country and also offer a telephone counselling service. Sometimes it can help to talk about your feelings or share your experience with people who may have had similar experiences.
If you have lost sight in both your eyes you may find your sight isn't as good as it was but, there are a lot of things you can do to make the most of this remaining vision. This may mean making things bigger, using brighter lighting, or using colour to make things easier to see.
Ask your ophthalmologist, optometrist or GP about low vision aids, like a magnifier, and ask for a referral to your local low vision service. You should also ask whether you are eligible to register as "sight impaired" (partially sighted) or "severely sight impaired" (blind). Registration can act as your passport to expert help and sometimes to financial concessions. Even if you aren't registered a lot of this support is still available to you.
Local social services should also be able to offer you information on staying safe in your home and getting out and about safely. They should also be able to offer you some practical mobility training to give you more confidence when you are out.
Our Helpline can also give you information about the low vision services available, schooling, work and employment and our website offers lots of practical information about adapting to changes in your vision and products that make everyday tasks easier.
The RNIB Helpline is your direct line to the support, advice and products you need. We'll help you to find out what's available in your area and beyond, both from RNIB and other organisations.
Whether you want to know more about your eye condition, buy a product from our shop, join our library, find out about possible benefit entitlements, be put in touch with a trained counsellor, or make a general enquiry, we're only a call away.
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RNIB's guide to adapting to sight loss offers ideas for people with sight problems on making life easier and ways of getting the most out of life. You may also find the following useful:
RNIB is part of an organisation called AMD Alliance International whose role is to promote awareness of age-related macular degeneration – the leading cause of blindness in the western world.
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