Newsletter no

Newsletter no. 9 July 2003

All material published in the newsletter is checked for accuracy by leading uveitis specialists.

The patient's view section is not checked in this way and is a chance for people to share their views and experiences.

Introduction and News

Eye Drops: Their use in uveitis patients

A Patient's View: Two uveitis sufferers have sent in accounts of their experiences of uveitis.

Introduction

There has been a bit of a gap since the last newsletter due to a variety of other commitments I’m afraid, but here we are again.

The use of eye drops forms the main theme of this newsletter. This is a subject that is easy to overlook, as it seems a rather simple topic. However it forms the mainstay of treatment of the condition for most people, and I’m sure it is worth looking into the different types of drops used and how best to use them.

I would imagine that there are many things taken for granted about taking eye drops so I hope even experienced users will benefit from going over their use.

One of the group’s aims has always been to host public meetings to allow people the chance to meet others with uveitis and get up to date on treatment and research etc.

The first of these meetings has now been set for this autumn, at Moorfields Eye Hospital in London. I hope to see as many people there as possible. See below for more details.

Later this year, on Saturday, November 8^th a public meeting will be held at Moorfields Eye Hospital in London. This will be the first public meeting of the group and hopefully will become the first of regular annual meetings. It is also hoped that similar meetings could be arranged in future in different regions, in Scotland and the South West for example.

Professor Susan Lightman, a leading specialist in uveitis, who is based at Moorfields, will speak at the meeting. It is hoped there will be an opportunity to meet with other people such as family support staff at Moorfields.

The meeting will focus entirely on the needs of patients and cover up to date treatment and research news and practical advice.

To make best use of this meeting, it will be important for anyone who would like to come along to a meeting to get in touch so that an idea of numbers attending can be assessed. It would also be useful to have any questions or suggestions on topics to be covered before deciding the format of the meeting.

Anyone not able to attend but wanting anything brought up at a meeting is welcome to get in touch to suggest topics or questions to be covered

There are smaller address exchanges for families with children with uveitis and also nursing staff. These seem to working well and anyone who wishes to be added or wants to find out about these, then please contact us.

Eye drops are used to deliver a variety of medications to our eyes. They may have different purposes which include;

· Aids to diagnosis e.g. drops to aid an eye examination, or the drops used in measurement of eye pressure.

· Local anaesthetics to aid examination or to enable the Ophthalmologist to perform simple surgical procedures.

A patient with uveitis may expect to come across at least a few of these different types.

Eye drops are just one means of administering drugs to treat uveitis and its possible complications. The other main methods, including injections and systemic treatments (tablets) are not covered in this article.

There is not a ‘best’ or ‘standard’ way to treat uveitis. The type of drug and whether it is to be administered by eye drop or tablet or whatever will depend on the type, the part of the eye affected and the severity of the uveitis.

Starting with the main use of eye drops in uveitis patients, the treatment of the condition, it is worth looking at this in 2 groups:

The differences between 1.and 2. are important to understand because, as a patient, it is always useful to know what your current treatment is aiming to achieve. Is your uveitis active, (is there inflammation present?). If it is active, is this what your drops are for?

There may be other things going on with or without inflammation, which need different types of treatment. An example would be a rise in pressure inside the eye, which can be treated by a specific type of drop.

The majority of patients with uveitis will have a form of anterior uveitis. This type describes inflammation, which is present at the front of the eye. (See fact sheet “What is anterior uveitis”). Eye drops pass directly through the cornea into the eye. They can potentially treat any condition that is present in the front of the eye, as in anterior uveitis but will generally not penetrate further back in the eye as in posterior uveitis.

There are different steroid drops available and the Ophthalmologist selects the best drop for each individual’s situation.

There is a large range of steroid eye drops that the Ophthalmologist can choose from.

The main choice to be made is the strength of the drop to be used. This will depend on the severity of the inflammation and other factors, possibly, such as the perceived threat to vision or whether only one or two eyes are involved.

The general principle of treatment nowadays is to treat any inflammation aggressively, with a high initial dose, tapering down as soon as possible to no drops or a minimal dose.

This method will hopefully bring inflammation under control as quickly as possible, whilst still delivering the least amount of steroid over a long period of time.

It is well known that the use of steroid drops can increase the chance of developing a cataract or having raised eye pressure. The aim of treatment then becomes a balancing act between the ‘zero tolerance’ to inflammation and aggressive treatment on one hand and a desire to minimise the side effects on the other.

Examples of some of the main steroid drops are given below. They are listed with the ‘strongest’ drops at the top.

These drugs can be prescribed after surgery to reduce inflammation, but are often not strong enough to treat uveitis alone. They also help maintain dilation of pupil.

In anterior uveitis, the iris becomes inflamed. To relieve pain and, very importantly, to prevent the lens sticking to the eye (posterior synechiae), then this group of eye drops are used. They work by paralysing the iris (a muscle), and dilating the pupil. Whilst their use is important to avoid complications, their main disadvantage is that they will blur the vision. Because of this, the type of mydriatic used is chosen carefully, to produce the required effect whilst causing as little inconvenience to the patient.

atropine: This is fairly long acting (1% may last around 2 weeks), and is required with severe inflammation and where there is a high risk of synechiae formation.

tropicamide: (sometimes known as mydracyl). This is a short acting drug and may be used as a night-time drop, when only intermittent mydriasis is needed.

phenylephrine: this is often used in combination with other mydriatics, more often for dilation as part of the examination performed by your Doctor.

These ‘dilating drops’ are used to treat the symptoms of uveitis and also to prevent the formation of posterior synechiae. In this way, they almost fall into the next group.

2. Treatment of complications or side effects that arise in cases of uveitis

Sometimes, complications will arise in cases of uveitis. If so, they can usually be simply dealt with and managed. Occasionally the complication can ‘take over’ as the main problem whilst the uveitis may be under reasonable control. The complication may be as a result of the damage done by the inflammation in the first place, but it can also be an unfortunate but acceptable side effect of the steroid treatment.

The main example of eye drops used in this way is the drugs used to treat raised eye pressure:

· Beta-blockers eg betaxolol, carteolol, levobunolol, and timolol. As some systemic absorption may occur, then these types of drops may be avoided in patients with certain heart problems and asthmatics.

If beta-blockers are not suitable, e.g. for asthmatics, or if the rise in eye pressure is not easily controllable, this group of drugs is used. Acetazolamide is given by mouth or by intravenous injection. This drug is given if drops alone cannot control the pressure. It is not ideal for long-term use and is associated with quite a few systemic side effects. Dorzolamide is basically the same drug as acetazolamide but in drop form. This is mainly used in patients who cannot take beta-blockers but is sometimes used in combination with beta-blockers.

Examples are apraclonidine and brimonidine. These drugs are generally not used long term but may be used, for short periods postoperatively.

These agents need only be taken once a day, often at night. Their role in treatment of glaucoma as a complication of uveitis is uncertain, but is becoming increasingly prescribed.

Other uses of eye drops

The eye drops we come across as uveitis patients may not all be concerned with the direct treatment of the condition.

local anaesthetics, These are used to help examine eyes, and in combination with other preparations can be used to measure pressure in the eye.

mydriatics. This group already covered, are commonly used to dilate the patient’s pupils to enable the Ophthalmologist to see into the eye more easily.

Eye drops penetrate the eye directly through the cornea into the anterior chamber. A single drop is all that the ‘pocket’ formed by the lower lid can hold. Any more will flow overflow or pass down the tear duct into the nose. (Hence, when taking drops, just a single one should be placed). The eye drop may enter the rest of the body by getting into the systemic blood circulation. It does this by passing through the nasal mucosa after going down the tear duct or by entering the small blood vessels in the conjunctiva.

Whether this happens to any significant degree is not absolutely sure but it does seem possible. The significance of any systemic side effects would vary with the type of drop and its overall dosage, and possibly with other existing medical conditions or with pregnancy and breastfeeding.

It is possible to reduce any systemic absorption by ‘occluding’ the tear duct. This involves pressing down on the inside corner of the closed eye after placing the drop for about a minute. A nurse at the clinic would be able to show you this if you weren’t sure.

There should be very little to worry about with the amount of a drug that can be absorbed in this way, but if you have any concerns then it may be a good idea to have a word with your doctor.

I know many of you of you reading this will have placed more eye drops than I have had hot dinners, but it is often the simplest things that get taken for granted or forgotten, and so it was thought worthwhile at least to offer some ‘revision’. If you have just started using eye drops then hopefully this will make sense of them and prevent any bad habits appearing.

Firstly it is a good idea to know what type of eye drops you have, what they are achieving, and what potential side effects to watch out for.

There will probably be a bit of variation in what instructions are given in different clinics but there are basically 2 different methods, which are covered below:

To avoid confusion set out the eye drop bottles in order, separating those for the right and left eyes, if both are needed. Have ‘drops to go in’ and a ‘drops taken’ places to avoid repeating any: I apologise if this sounds simple but, if like me, you are not a naturally organised person then it is worth getting a method you can stick to. Then:

2. Tilt your head up and gently pull down the lower lid with one hand. Then look up.

4. Now gently squeeze a single drop into the pocket formed by pulling the lower lid down.

5. Close the eye and without rubbing the eye, gently dab any excess drop away with clean cotton wool or tissue.

· If you have different types of drops to put into the same eye, then try and leave 5 mins. between each. If one is an ointment then put the drops in first.

· Storage of drops Once started, a bottle of eye drops must be discarded after 4 weeks. Most drops should be stored at room temperature. Only certain drops must be stored in the fridge. This will normally be clear on the bottle. (Examples are cyclopentolate).

· Some drops may make the vision blurred for variable amounts of time. If this is the case then plan when they are taken so as to avoid driving or work.

· You may be asked to stop the eye drops escaping from the eye by ‘blocking’ the tear duct so that the drops don’t run away through it. This can be done by pressing on the inside of the closed eye with the index finger for a couple of minutes. Do not worry about this, as this is only necessary with some kinds of drops. Follow the doctor or nurse’s instructions.

· If you notice any marked stinging or irritation after placing eye drops then report this to your doctor.

· Some people with anterior uveitis know the signs of a flare up starting quite well. If this is the case it may well be worth asking your eye clinic for a supply of drops if you are going away on holiday, for example. (Making sure to check about shelf life of unopened drops etc.).

A Patient’s view

Two uveitis sufferers have sent in accounts of their experiences of uveitis.

Before I contacted the Uveitis Information Group I felt quite isolated, having only ever known one lady who had experienced iritis once in her life and could not really help me.

I was first diagnosed as suffering from iritis in my right eye, November 1998. My husband took me to the local Eye Casualty Department, although my G.P. was trying to treat the condition at the time. It was at this point I asked for all the necessary blood tests, but nothing else showed up, which I was pleased about.

I would say at this point, no one tells you the seriousness of Iritis. I found it difficult to do my work; I had not used the eye drops at the correct intervals, because I had not learnt to do this for myself and generally made things worse. Unfortunately my employer was not supportive towards me. I realised even if I did not get paid for being off sick, I had to stay away from my part time work and get my eye right again. The only way to do this was to use all the drops the hospital had given me correctly (Predforte and Cyclopentolate). Towards the end of my nine weeks away from work I found out that the recent Contract of Employment I had signed, which stated I did not get paid if I went off sick, did not apply, and that I was entitled to sickness benefit from my employer.

My next reoccurrence of iritis was December 1999. By this time I had learned my lesson, not to work whilst being treated and had of course got the knack of putting my own eye drops in (easy when you know how! ) This time I was off work five weeks.

Things went quiet again, thankfully because it was my only daughter’s wedding in March 2000.

Then once again the iritis flared up again in April 2000. I was back on the Predforte and Cyclopentolate. Then I was able to stop the Predforte for just twelve days from 16 June 2000 to 28June 2000. After that even up to this present day I have been on various eye drops mostly Predforte. In the year 2000 I had five attacks of iritis and in the end I had to stop working altogether, because not being able to see properly I was beginning to make mistakes and found the pressure of the job increasingly stressful. Even whilst being off work I have had one more attack in March 2001.

I can see that the hospital has had quite a job to get control of my condition. My consultant has said that no one is to tell me to stop using the eye drops (as the nurse practitioner at the hospital did at one point) I am now on non-steroid anti-inflammatory drops twice a day. I feel at present as though I am hanging on by my fingernails!

I am still away from work, believing that if I return I would simply go back to square one and I am not prepared to do that, my eye sight is more precious to me than work.

In February 2002 my Incapacity Benefit was stopped and I am currently appealing against that decision. With the help of all the information of the Uveitis Information Group I believe I am in a better position to prepare my case for the appeal, knowing so very much more about Uveitis.

I hope that the experience I have been through will help some one else. We are born with two eyes and I will continue to fight to save the sight in mine. At the age of 58 I feel “ the system” we have contributed to in our working life has let me down badly.

I was involved in a car accident in 1999. I was hit from behind very hard and suffered a painful whiplash injury. A couple of days later I noticed my left eye was bloodshot and red and for weeks after, and for weeks after the accident, it would come and go, but gradually got worse. I didn’t think anything of it and didn’t link it to the accident. It got really bad over a couple of days so I thought I had conjunctivitis. My doctor briefly examined me and gave me some ointment. It didn’t go away and he was concerned and got me an appointment at the eye clinic that day. After a few appointments there, they diagnosed iritis. It has been a roller coaster of emotions for me.

I have been told that I have a small tear in the back of my eye that will repair itself and the iritis should subside. One Consultant was in no doubt that the accident caused my iritis (he called it an eye trauma).

I’ve seen many different Consultants and the feedback I am getting is that shock or stress from my accident could well have brought it on. I’ve also been left with an injured left shoulder, which is ongoing problem. It’s like the accident shook my whole system up and certainly hasn’t felt the same since.

Both my eyes were healthy before the accident and I feel 100% that my iritis was caused by the accident. I have now a battle ahead to prove it. It’s hard for some people to understand why I need to do this for myself, but I feel angry this has happened to me.