Uveitis Information Group (Scotland)

Frequently Asked Questions

• What is the Uveitis Information Group?
• What is the Uveitis Information Group Mission?
• How do I locate a Uveitis specialist?
• What is uveitis?
• Why Me?
• What types of uveitis are there?
• Can I be cured?
• Is it caused by stress?
• Why do I have to use drops?
• Are steroid drops dangerous? Do they cause cataracts?
• Will I have to take tablets?
• How will I know the uveitis is under control or is no longer present?
• Will I go blind?
• Should I worry if a cause cannot be found for my uveitis?
• How will uveitis and the medications given to treat it affect a pregnancy and breast feeding?
• How can I tell if my child has uveitis?
• What is the difference in inflammation and infection?
• What causes Uveitis?
• How many people get Uveitis?
• Is Uveitis contagious?
• What research is being conducted on Uveitis?
• Are there any Clinical Trials in which I can participate?
• My Ophthalmologist used a lot of language I didn't understand. Is a glossary available?
• Are there any support groups available for patients with Uveitis?

The UIG is a scottish charity devoted to providing easily understood patient information and support.

Uveitis Information Group aim to:

• provide clear information about uveitis and its treatment for patients, families, researchers, ophthalmologists and other healthcare providers.
• raise the profile of uveitis
• support patients who have been diagnosed with uveitis and ophthalmologists dealing with uveitis
• improve services so that people with a potential diagnosis of uveitis are seen by an appropriate person and avoidable eyesight loss is minimised

• To promote a positive attitude to all aspects of uveitis
• To encourage the best possible communication and cooperation between patients and medical staff involved in the treatment of uveitis.
• To raise funds in order to increase awareness of uveitis
• The UIG is interested in feedback in the form of comments, articles or letters for the newsletters, from both uveitis sufferers and medical staff.

Uveitis is normally diagnosed by a local eye clinic. If the disease is mild, then diagnosis and treatment may be managed within your local eye clinic. If the inflammation is severe, persistent, difficult to treat, unusual, or the primary eye care provider or patient wishes, then a referral may be made to a specialist in Uveitis.

If necessary, the Uveitis Information Group can assist anyone who needs help finding a uveitis specialist.

The term uveitis really means that you have inflammation inside the eye. There are lots of different types of uveitis with many causes so the term itself does not say anything about the severity or cause. It is not one single disorder. We do not know why people get certain forms of uveitis. For some types of uveitis, it can be caused by trauma or injury to the eye.For other types of uveitis, it can be associated with an infection (e.g. toxoplasmosis) or another illness or disease, such as sarcoidosis or behçets Disease.

Other patients with uveitis have an increased likelihood of contracting it due to the genes they carry (eg some types of uveitis are associated with certain gene types such as HLA B27 and HLA A29). However, most people who carry these genes do not get uveitis, so it is likely that uveitis is an autoimmune disease (an illness that occurs when the body tissues are attacked by its own immune system) which is triggered either by a virus or an infection or an environmental factor. For these types of uveitis, treatment is usually based around trying to stop the immune system attacking your body.

Uveitis is divided initially into:

• anterior in which only the front part of the eye is involved (this is also sometimes called iritis and iridocylitis). Anterior uveitis can be subdivided into acute disease which lasts a few weeks and chronic disease which is defined as lasting more than 3 months and can last many years. Anterior uveitis is the most common type of uveitis.
• posterior in which the back of the eye is involved (the choroids and retinal layers) Posterior uveitis is usually chronic and can last a long time except in patients with toxoplasmosis when it may settle in a few weeks. It is important to know which type of uveitis you have as this determines the type of investigations and treatment you need and well as the complications.
• intermediate uveitis which is inflammation just behind the iris (sometimes known as pars planitis).
• panuveitis or diffuse uveitis is the term used when all three of the above categories are involved.

This depends on what type of uveitis you have. Some mild forms of uveitis (particularly anterior uveitis) can be self limiting or effectively treated with eye drops. Other forms of uveitis need medication that suppresses the inflammation and treatment will last as long as the inflammation remains. Sometimes this will be years or a life time. In any patient, it is not possible to know how long the disease will last and when it will go away. Most people with long term or chronic uveitis focus on learning to deal with side effects of medication and any loss of vision that might occur, as well as leading a healthy lifestyle and learning to avoid stressing the mind and body. A lot of patients tell us that stress can bring on an attack or cause a relapse. There is a relationship between stress and the immune system but it not an easy one to understand. Unfortunately removing stress does not guarantee the disease will go away but luckily not all patients find stressful events have any effect on the disease either. Inflammation at the front of the eye (anterior uveitis) can be treated with drops as the drugs in them penetrate well into the front of the eye. Steroid drops come in a variety of types and strengths and are given to suppress the inflammation until it goes away. The more intense the inflammation you have, the stronger the steroid drops and the more frequently you have to apply them. As the inflammation is brought under control, the frequency and strength of the steroid drops can be reduced. Steroids can also be given as an ointment used at night - this releases steroids into the eye keeping it "marinaded" in steroids overnight. Dilating drops are given to stop the iris (the coloured part of the eye), which becomes sticky when it is inflamed, sticking to the lens which is right behind it. If it sticks a lot, there is an increased likelihood of cataracts and other complications in the long term. Again there are a variety of types of dilating drops which last different lengths of time. Often the pain of acute inflammation is helped by dilating the pupil as spasm of the iris can contribute to the discomfort. It is true that steroid drops can cause cataracts in some people, but uncontrolled inflammation can also cause them and will do more harm to the eye. It is therefore best to get the inflammation under control with the lowest amount of steroids required. Patients who have inflammation at the back of the eye which is causing trouble cannot use drops to control it as the drops do not reach the back of the eye. Sometimes steroids can be given by injection into the eye Most patients who have both eyes involved take steroid tablets to control the inflammation. As we all know steroids have lots of side effects which are mainly dose dependent. Your consultant will, therefore, try to reduce your steroid intake as soon as your inflammation seems to be under control. Other drugs which suppress the immune system can work with the steroids enabling them to be effective at a lower dose, although they do have side effects of their own. The tablets don't cure the disease and have to be taken for as long as the disease is active. Treatment can bring the inflammation under control and it is only possible to know whether the treatment is still required when you start to withdraw it. If all remains quiet, the uveitis is in remission but may relapse later. If the disease activity increases as the treatment is reduced, the disease process is still active and treatment needs to be continued. If by going blind you mean will you wake up in darkness, no you won't. Again, there are different courses for people with anterior or posterior uveitis. Most patients with acute uveitis do not lose vision and treatment is aimed at controlling the inflammation to prevent it causing visual loss. The main causes of visual loss in patients with chronic uveitis are cataract (which can be removed), glaucoma or damage to the back of the eye from high pressure inside the eye, and macular oedema or 'waterlogging' of the retina due to the chronic inflammation. Control of the inflammation on the lowest dose of drugs possible and ensuring the intra ocular pressure is not raised are key to reducing the chance of permanent visual loss. In many people, no obvious cause is found for their uveitis. In many diseases associated with inflammation, no underlying cause can be found either - the most common example being rheumatoid arthritis. In some patients , inflammation can be detected elsewhere such as in the lung and the disease process may be called sarcoidosis, but we do not know the cause of that either. In some patients infection is the cause such as that associated with toxoplasma or toxocara but these have very distinct clinical appearances allowing them to be easily detected on eye examination.

Current theories of why people get these autoimmune diseases such as rheumatoid arthritis, insulin dependent diabetes in young people, thyroid disease and uveitis include certain infections in which the immune system responds by producing cells to fight the infecting which also react incidentally with self tissue. This would not happen in everyone but only in patients with a certain genetic make-up which would form these cross-reactive cells. By the time the uveitis occurs, it is no use treating the infection as it has long gone from the body - it is the immune response which causes the damage and this is what is treated.

Drops are the most frequent type of therapy used to treat uveitis and are not a threat as only very low doses get into the bloodstream.

Drugs taken by mouth include steroids, azathioprine, cyclosporine, methotrexate, mycophenolate mofetil, tacrolimus and diamox amongst others used less commonly. Of these diamox is definitely contraindicated in pregnancy but the others are less clear cut. There is a risk with any drugs you take in pregnancy and although the risk is small, it is not zero. It is better not to be pregnant or breastfeeding on anything. However, this is not always realistic and most of the experience comes from patients who have had kidney transplants, are on similar medications and have had successful normal pregnancies. If you are contemplating getting pregnant or become pregnant while taking these type of drugs, it is very important that you discuss the situation with your ophthalmologist as quickly as possible. In this way, everything can be discussed and a plan that is best for you sorted out.

Acute uveitis has some fairly obvious symptoms:

• Painful, red eyes
• Photophobia (sensitivity to light).

Often the eye can look normal and feel normal The symptoms are usually small changes in a child's behaviour.

Your child may:

• avoid outside play such as the playground and sport
• be clumsy
• watch television in a different or strange way
• fall over frequently, bump into things, or trip on uneven ground
• have swollen or painful joints, especially around the fingers and knees.

For more information about uveitis in children please see our fact sheet written by Professor Susan Lightman of Moorfields Hospital: "Uveitis in Children". Inflammation is a process mounted by the body in response to a triggering event which is interpreted to be harmful to the body. This inflammatory response uses white blood cells (leukocytes) as well as other substances in the body to attempt to control the harmful process. As an example, when a splinter lodges in someone's finger, an inflammatory response occurs. This is why the area around the splinter becomes swollen, sore, red, and warm. The inflammatory response not only helps to control the harmful process, but to repair any damage which occurred. An Infection is an invasion of the body by germs, which may be bacteria, viruses, parasites, fungi, or other organisms. An infection causes an inflammatory response, but the trigger is different than in non-infectious disease, in this case being a germ. Inflammatory diseases can occur without being caused by an infection, and in fact this is the typical situation in uveitis, many of which are currently considered to be autoimmune in nature.

Therefore inflammation may occur without infection, but rarely does infection occur without inflammation. Uveitis is an inflammatory disease that can be caused by infectious OR non infectious processes.

As mentioned above, uveitis may be caused by infectious and non infectious processes. There are hundreds of possible causes of uveitis and many more which ophthalmologists have not even discovered yet! To gain more knowledge in those areas where information is known, visit the Essential Info page of this web site. It is estimated that as many as 500,000 people in the UK may be suffering from uveitis at any one time. This figure is based on extrapolated data and may not be very accurate, but it is the best estimate that we currently have. In general, you cannot "catch" uveitis from someone else, no matter how close your contact with that person. Uveitis is an inflammatory disease within the eye. However, certain infections which can cause uveitis are transmittable from person to person, such as Tuberculosis and Syphilis. Patients should discuss possible causes of their uveitis with their doctor. A number of scientists conduct research which has either direct or indirect importance to uveitis diagnosis and treatment. Go to the Clinical Trials section of the website where a list of current trials can be found. Research is also being carried out in many other countries, including the UK, France and Germany. Yes! Please see the Research and Trials section of the website where a detailed description tells you what is involved in a clinical trial and there is a link to current studies. Yes! This site has an online Glossary of Terms Yes! Our Support section on this website has a list of links to uveitis-specific support groups known to us.