Your ophthalmologist will use a standard slit lamp microscope to look for signs of inflammation in your cornea, including specific clinical signs characteristic of AK. This is sometimes followed by a corneal scrape and culture (a process by which some cells from the surface of your cornea are removed and sent to a laboratory for further analysis), or a swab of the cornea to check for acanthamoeba DNA using a test called “PCR”. Results for both these tests take a few days to come through. In some cases, AK can be detected using a confocal microscope, a powerful scanner that can see acanthamoeba cysts within the various layers of the cornea. Your ophthalmologist will use these tests together with other clinical signs and symptoms in order to decide on the appropriate treatment plan.
In the early stages, acanthamoeba keratitis (AK) and other microbial corneal infections have similar signs and symptoms, making it difficult to tell immediately which one you may have. This is why a variety of tests and clinical signs are observed. Sometimes diagnosis can change when the doctor receives more information from lab tests. Diagnosis can also change depending on how your eye(s) respond to treatment.
The primary difference between AK and other microbial infections is that it is challenging to treat, due to its resistance to many forms of therapy. Acanthamoeba in the dormant cyst form can survive for long periods of time. AK cannot be treated with antibiotics because it is not a bacterial infection.
Typically treatment is with antiseptic drops, including PHMB, Chlorhexidine, Brolene or Hexamidine, which have an anti-amoebic effect. These are used either individually or in combination.
Usually you’ll need to take these eye drops every hour for the first few days (including overnight), reducing to 2-hourly by day only, and then less frequently as the treatment progresses. It can be quite difficult to take eye drops through the night during the first few days, but it’s very important to try and stick to the regime outlined by the doctor as best you can.
In addition to the anti-amoebic eye drops, you may be given anti-inflammatories or painkillers to help with the pain. You may also be given a dilating drop early in the infection to stop painful spasms of the coloured part of the eye, the iris. Around 10% of Acanthamoeba infections have dual pathology, which means that another infection, usually bacterial, is also present. If this is the case for you, we may also prescribe you with antibiotics as well as your other drops. Sometimes these are also given to guard against bacterial infection while the eye surface is disrupted in the early stages of the disease. Patients with severe inflammation or scleritis (inflammation of the white part of the eye)are sometimes prescribed steroid eye drops, although not every patient requires these and their use needs to be carefully managed.
As all patients react differently to the infection, your doctor will assess the most appropriate treatment regime for you. The treatment may change depending upon how your eye responds. If you have any concerns about your treatment then make sure you ask the doctor at your clinic appointment.
Please bring all your eye drops to your clinic appointment and please do not stop taking them on the day of the outpatient visit. The nurse or pharmacist will show you how to use the drops properly.
There are currently no licensed medicines approved for the treatment of acanthamoeba keratitis in any country. Most ophthalmologists use the same group of antiseptic eye drops that have been shown to kill acanthamoeba both in the laboratory and are effective in treating patients in large case series. Some case reports have indicated successful treatment with other types of treatment such as collagen cross-linking, antifungal drugs, and a newer drug called Miltefosine. Although the results have only been reported in a few individual cases, more extensive studies are required to determine whether any of these therapies are suitable options or alternatives to existing treatments. Your team will be happy to discuss your treatment plan and answer any questions or queries you have. You are strongly advised to come in for recommended follow-up appointments even if your eye/s is/are feeling completely better.
If you usually pay for NHS prescriptions, prescription prepayment certificates are available in England and they can save you money. Certain individuals, such as those under 16 or over 60, or those in possession of a valid HC2 certificate (full help with health costs) are also eligible for free NHS prescriptions. Speak to the pharmacy to find out more.
Generally speaking, you should try to leave around five minutes between drops. This can be difficult when you are using a number of different drops every hour or every two hours, so try and leave at least two minutes between each one if using more than two.
Setting alarm clock reminders or using smartphone apps can help you keep track.
Do not worry if some of the eye drop falls out – this is perfectly normal. It is a good idea to tilt your head back and keep your eye closed for a minute or so after you’ve put the drop in – to ensure all the medicine has got into your eye – although this can be impractical if you’re on the move or in a public place. Try your best to do this at least when you are able to. If you miss your eye completely, do the drop again. If a small amount goes in, then wait till your next drop and try and ensure it goes in properly the next time. If a friend or family member is able to help put drops in, this can sometimes be useful, particularly if you have reduced vision in the affected eye(s).
If your eye is very inflamed, red or irritated, or if you have an epithelial defect, you may find the drops sting a lot. Different formulations of eye drops designed to kill acanthamoeba can also sting when they go in and when they mix with the previous one used, so try and keep a decent gap between drops. Keeping drops in the fridge can help ease the stinging. Perhaps try a cold compress or ice pack on your forehead or down the side of your face after the drop has been done. Tell your doctor if you have any concerns.
Contact the hospital pharmacy as soon as possible. Moorfields Pharmacy’s direct line is 020 7566 2362.
If you have a number of different drops to take at different times of the day, set an alarm clock and keep a notebook handy to help you tick off the ones you’ve done. There are quite a few helpful ‘reminder’ apps for smart phones, which can also help you keep on top of taking your medication.
Many patients carry a cool bag with ice packs in it to keep their drops cold when they are out. Others use a thermos flask filled with ice cubes. There are many options available to buy on the internet. Remember, during the summer months non-refrigerated eye drops can also be affected by high temperatures.
Carry a small bottle of alcohol based antibacterial hand gel with you for times when you are not able to wash your hands.
Although steroid drops can both aid healing and make the eye more comfortable by reducing inflammation, using steroids may also delay the clearing of the infection and cause other complications including cataract (clouding of the lens) and glaucoma (raised eye pressure).The use of steroids will therefore need to be carefully managed by your ophthalmologist.
A small percentage of patients experience scleritis (inflammation of the white part of the eye) which is usually treated using steroid drops and, in more severe cases, additional oral medication is also given.
Some patients experience complications including a fixed dilated pupil due to damage to their iris.
Vascularisation of the cornea (growth of blood vessels into the cornea) and secondary bacterial infections sometimes also occur. Other complications such as cataract and glaucoma can form as part of severe acanthamoeba keratitis, which is why, at each clinic appointment, your doctors will perform thorough checks on your eye(s) to look out for signs of these complications.
Although each patient is different, generally speaking those who are diagnosed and receive appropriate treatment quickly can expect their treatment to last three to six months. Some patients recover sooner, and more complicated cases can last for over a year. Although the early stages of the disease can be very difficult and can limit your ability to do your day to day activities, as the infection comes under control you should be able to continue many of these whilst continuing to receive treatment.
Yes, although if you have recently had a corneal scrape or if you have been told you have an epithelial defect (a breakdown on the surface of your affected cornea) you may wish to avoid getting water in your eye for a few days as a precautionary measure. Swimming should definitely be avoided during this time. Ask your doctor at your next clinic appointment if you are worried about this.
Eye makeup should be avoided in the early stages of your treatment, as this can sometimes be a source of additional bacteria entering the eye.
You should be careful not to rub your affected eye(s) too much and removing eye makeup should be done as carefully as possible with gentle cleanser so as not to irritate the cornea.
Once your infection has started to settle, it may be ok to wear non- waterproof eye makeup. Ask your doctor at your next appointment.
You may want to buy a pair of prescription sunglasses to help you cope with daylight. Drawing curtains and blinds at home can help. It’s also possible to buy a shade or eye patch to wear over glasses – this can help if you want to watch TV or work at a computer. Most people feel self- conscious at first, but it can provide a relief for your symptoms. Try not to wear the patch all the time, so that fresh air can circulate around the eye.
Many patients find it helpful to wear a hat and sunglasses when they go out. Check with your doctor before wearing any type of patch that sticks to the eye itself.
Yes, you can. Many patients have found exercise is a good way of helping them to relax and to cope with the infection. It has also been shown to help improve self-esteem, mood, sleep quality and energy, as well as reducing your risk of stress and depression. You should do as much as you feel like doing, although you should take care with contact sports such as rugby. Ask your doctor if you have any concerns.
You must tell the DVLA if you have any problem with your eyesight that affects both of your eyes, or the remaining eye if you only have one eye. Non work- related drivers must be able to read (with glasses or contact lenses) a car number plate made after 1 September 2001 from 20 meters. You must also meet the minimum eyesight standard for driving by having a visual acuity of at least 6/12 measured on the Snellen scale (the standard test chart used at hospital eye units) with both eyes together or, if you have sight in one eye only, in that eye. You must also have adequate peripheral vision (field of vision). It may be helpful to remember that around 1 in 20 people in the general population have poor vision in one eye. Ask your doctor at your clinic appointment whether you meet the minimum standards of vision for driving. You may need to inform your car insurer too.
Some people with acanthamoeba keratitis have found a book, “A Singular View: The Art of Seeing with One Eye” by Frank B. Brady helpful when first dealing with poor vision in one eye. This book can be purchased online.
This will depend on the extent to which your cornea has been affected by the infection. For those who wish to return to contact lenses after acanthamoeba keratitis, daily disposables are usually the most suitable option. Most patients will need to wait several weeks or months to ensure they are clear of infection and their eye(s) are healthy before wearing contact lenses again. Ask your doctor what’s right for you.
Many patients are interested in whether they can have laser surgery on an eye affected by acanthamoeba keratitis, to avoid wearing glasses or lenses after the infection has cleared. This is a decision that has to be taken on a case by case basis and is dependent on any damage left behind by the infection. Ask your doctor what might work for you.
This varies enormously and also depends on the type of work you do. Some patients have worked throughout their illness; others have found it necessary to take sick leave. You should return to work when you feel able to perform your duties appropriately. Some people return to work with reduced working hours or duties for a period of time. Ask your ophthalmologist for a letter/certificate for your employer if you feel unable to return to work in full capacity or to explain the importance of taking medication etc.
Advice on dealing with the impact of illness on employment is available from RNIB, Citizens Advice Bureau and The Money Advice Service. At Moorfields, you can talk to one of our eye clinic liaison officers (ECLO’s), who are available at City Road as well as our other networked sites.
Yes, although you should discuss any foreign travel plans with your doctor in order to ensure you will continue to receive appropriate treatment whilst away.
Yes, as long as you feel able to. Reducing the brightness on your screen or wearing an eye patch or shield can also help.
Any sudden increase in pain, redness or loss of vision should be treated as an emergency. You should attend Moorfields A&E department in City Road for a further examination (open 24/7 for emergency eye problems only), or contact your clinic to arrange to be seen urgently.
This includes an initial consultation and a visual acuity assessment.
If further outpatient tests and investigations are required, they will be charged at an additional rate. Your consultant will discuss this with you at your consultation.
The cost of onward treatment will be provided after initial consultation, based on your personalised treatment plan.
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