Read this if you have been recently diagnosed with uveitis

Everyone can develop uveitis. However, it is a very rare disease which not a lot of people know about.. You probably don't know anyone else who has or has had uveitis. You may even have already visited multiple ophthalmologists and specialists who have not been able to help you. If this is your case, you may find yourself experiencing many different emotions: fear, anxiety, frustration, sadness, helplessness, confusion, vulnerability, loneliness, etc. If there is anything you should know is that you are not alone. Unfortunately, this is not unusual for uveitis patients. Many of us have found ourselves in this helpless position. In addition, the symptoms of uveitis are very unique because they can also induce anxiety. Naturally, sudden visual impairment or eye pain is an extremely worrisome situation. However, if you find yourself reading this article, I assure you that you are already taking a solid step in taking care of your health.

The clinical picture is very important in identifying uveitis. Patient’s symptoms provide valuable information to the ophthalmologist when evaluating the case and, most importantly, when choosing adequate treatment. Uveitis is usually an episodic disease. These episodes of inflammation may arise suddenly or insidiously and gradually heal under appropriate treatment. Determining the prognosis of this disease is not always a simple task since it depends on multiple factors: its cause, how soon it is diagnosed, the severity of symptoms, effectiveness of treatment, patient’s age and the occurrence of complications. If you have just been diagnosed with uveitis, some symptoms may be properly treated and cured as long as permanent damage to any structure of the eye has not occurred.

"Uveitis" is the term used to designate inflammation in the layer of the eye called the uvea. It is an umbrella term that includes any inflammatory process affecting this layer and other adjacent ocular structures. In reality, "uveitis" is not a term that represents a single disease, but rather a group of multiple diseases that share one symptom in common: inflammation of the uvea. This group includes heterogeneous diseases of multiple etiologies. In other words, it is a group of different diseases that can be caused by various reasons. Many cases of uveitis are idiopathic or related to ocular trauma. Others are associated with infectious or autoimmune diseases. These diseases may affect only the eyes (local) or the whole body (systemic). Other causes, although less frequent, are related to the prescription of certain medications, tattoos, eye surgeries or cancer. Now, despite the large number of diseases that could be causing uveitis, the most important thing during the patient’s evaluation is to classify the cause as either infectious or non-infectious. This is the single most important step when choosing the most appropriate treatment. The eyes are made up of a lot of connective tissue and also have a complex network of blood vessels. For this reason, uveitis is associated with many rheumatic diseases. These diseases are varied; but those that produce inflammation of the connective tissue through immune-mediated mechanisms, known as connective tissue diseases, often also affect the eyes. Other autoimmune diseases that are also associated with uveitis are neurological, gastrointestinal or may solely involve the eyes. Because of the large number of autoimmune diseases associated with uveitis, specialized ophthalmic practice in this field is comprehensive and often requires physicians from different specialties and the reference of multiple examinations. Sometimes it can take a long period of time before doctors can determine the exact cause of uveitis.

Ocular immunology is a complex practice in which clues are pieced together, like detective work, until a conclusion is finally reached. This process can become frustrating for both physicians and patients. Naturally, uncertainty is always difficult to tolerate. It is precisely for this reason that cases are classified as either infectious or non-infectious. This step allows physicians to quickly treat patients with uveitis without the risk of possible complications.

Tests a bloodwork

As part of the management of uveitis, ophthalmologists refer a series of labs and tests, depending on the clinical picture that patients present with. There is no set set protocol or standard-operating-procedure (SOP) for all cases of uveitis, so the orders will be different for each patient. A first episode of non-infectious anterior uveitis that responds well to treatment usually does not require ordering tests and labs. However, recurrent cases do. Most cases of intermediate or posterior uveitis usually warrant referral for labs, especially those that are recurrent or chronic. The purpose of ordering tests and labs is to rule out those causes that can be easily diagnosed by these tests. This step is important to establish a differential diagnosis but it is not free of complex nuances: they are diverse, expensive, false positive results may occur, vary in sensitivity, specificity and prevalence, etc. Most of the labs referred in cases of uveitis are not definitive, but are used to support the clinical picture presented by the patient. Therefore, the most important thing to do during the evaluation of each case is to collect an extensive and detailed medical history.

Sometimes it is not possible to find the cause of uveitis, but physicians always try to rule out the possible main causes and manage the inflammation with appropriate treatment. Controlling the active episode of inflammation and preventing future recurrences and complications is the main goal of uveitis management. Some

of the tests that are usually ordered in cases of uveitis are:

Blood count, general biochemistry and erythrocyte sedimentation rate (ESR)

CMP

Antinuclear antibodies (ANA), anti-neutrophil cytoplasm antibodies (ANCA), anti-phospholipid antibodies, rheumatoid factor (RF):

ANA/FNA, ANCA

ACE and Lysozyme:

ACE, Serum lysozyme, Angiotensin-converting enzyme levels

Histocompatibility antigens:

HLA-A29, HLA-A29.2, HLA-B22, HLA-B27, HLA-B51, HLA-5, HLA-15, HLA-51, HLA-B7, HLA-DR2, HLA-DR15, HLA-DQW7 Bw62, HLA-DR4 DQw3, HLA-LDWa Bw22J.

Specific serologies:

CMV, HIV, HSV-1, HSV-2, HSV-1/2, HSV-1/2, VZV, VDRL, Lyme AB testing, Epstein-Barr virus, Hepatitis panel, Bartonella panel, Toxocara species AB testing, Toxoplasma panel, Ricketsia (Q fever), Leptospira, Brucella, Chlamydia, FTA-ABS

Skin examinations:

PPD with anergy panel

Histoplasmosis

Coccidioidomycosis

Pathergy test

Others:

Colonoscopy, lumbar puncture, hearing test, hypercoagulability panel, etc.

Very often, the referral of labs and tests is a source of anxiety for uveitis patients or parents of children with uveitis. At first glance, the large number of tests and the nature of them can be very overwhelming. If this is your case, DO NOT FEEL AFRAID. This is only a preventive medical practice. It is always performed even if the patient does not belong to a high-risk group for the diseases being screened for. For example, tests for syphilis, HIV, tuberculosis and chest x-ray are some that are commonly ordered in an almost protocol way in all cases of uveitis, even if the patient is a young child. Remember, the purpose of this practice is to classify the uveitis as infectious or non-infectious. This will help the physicians choose the most appropriate treatment. Tests and labs should NOT be a cause for concern for patients or their loved ones.

"It's not the time to worry yet"- Atticus Finch talking to his children in the novel To kill a Mockingbird.

Treatments

Not everything is bad. There are actually multiple treatments available for uveitis. Your physician will be the person in charge of choosing the most appropriate one for you. Infectious uveitis is treated with anti-infective medications aimed at eradicating the organism responsible for the infection. These could be bacteria, viruses, fungi or parasites. In appropriate cases, this treatment may also include corticosteroids. In contrast, treatment for non-infectious uveitis is implemented as a “stepladder approach”. The first alternative against an initial episode of non-infectious uveitis is corticosteroids. If the inflammation recurs or requires long-term treatment, immunomodulators and surgery are the next therapeutic alternatives. In some cases, it is best to prescribe a short course of steroids and then quickly implement immunomodulators. Some factors that could determine this decision are: age of the patient, association with aggressive autoimmune disease, intolerance to corticosteroids, general health condition, among others. Finally, it is important to emphasize that non-infectious cases associated with autoimmune diseases generally involve a prolonged treatment with immunomodulators, especially if they have a chronic course.

It is very important that you know or write down all the details regarding the treatment: name of the medication, dosage, number of times a day it should be administered, side effects, etc. Follow your doctors' recommendations and do not abandon the treatment even when your symptoms have disappeared and you feel better. Also, clarify all your doubts and concerns with your doctor. Periodic observation and referral to other specialists. Cases of uveitis are evaluated periodically. Appointments are scheduled in advance for a certain number of weeks or months, as required by each case. They evaluate the effectiveness of the treatment, the general state of health of the patients and the appearance of other symptoms or complications. Pediatric cases and those caused by diseases of chronic course will require more frequent evaluations. Your ophthalmologist may even refer you to another medical specialist if you need immunomodulatory treatment or begin to show symptoms associated with another disease.

Self-management of uveitis

An important aspect of recovery from any disease is the self-care that patient provides for

themselves outside of the doctor's office. Uveitis self-care is primarily focused on providing

education to patients about their disease so that they can improve their quality of life and prevent the development of health complications. It offers prevention-focused and adaptive measures to manage episodes of inflammation. One of the great concerns of uveitis patients is the possibility of losing their vision. It is a very valid doubt which unfortunately does not have a unique and indelible answer, since uveitis is a disease that cannot be described with simplicity. Even so, the severity of the inflammatory episodes is the factor that has the most influence on the visual prognosis of patients; but, this precisely depends on other equally important aspects: the cause of uveitis, the frequency of reactivation of the episodes, the ocular structures affected and the age of the patients. Some causes are more aggressive than others, but the visual quality of patients depends on the ocular structures that are affected the most and the possible complications that may arise as a consequence. The age of the patients is also an important factor, since the visual prognosis is alas poorer in pediatric cases. There are no foolproof measures we can take to prevent uveitis. It is a natural risk that we all run. Uveitis itself is not a hereditary, transmissible or contagious disease. That is, ocular inflammation cannot be inherited, passed on to children or "rubbed off” onto someone else. Nor are uveitis and associated systemic autoimmune diseases caused by "unhealthy" lifestyles. Patients should not feel guilty for having developed their disease. On the other hand, uveitis is also not caused by watching too much television, using the computer, phone or playing video games too much. The symptoms of uveitis can significantly impact patients' lives. However, some of them can be cured and patients can resume their daily activities without major difficulties. It is a disease that impacts the quality of life of all patients. Nonetheless, it is a disease that can be happily and successfully lived with.