Self-management of uveitis

The goal of uveitis self-management is for patients to acquire the education and tools necessary to adaptively manage their disease. This is especially important for patients whose uveitis is recurrent or chronic. The active involvement of patients in the management of their disease ensures greater adherence to treatment and reduction of complications. In addition, providing a wide range of information offers patients skills they can implement in the management of their disease and the opportunity to develop measures to improve their quality of life. Patients should be the best educated about their health condition because they are the ones who have to live with it. Therefore, if you have just been diagnosed with uveitis, it would be of great benefit to read the information available on this page.

The most important aspects of self-management of uveitis are:

Educate yourself as much as possible

Uveitis is a little known disease both in the general population and in the medical community. This causes certain difficulties in the lives of patients living with this disease, as with any other rare or relatively unknown disease. Unlike other more common diseases, even those of a chronic nature such as diabetes or hypothyroidism, the availability of resources that can provide information to patients is scarce. Moreover, the ophthalmology profession does not always include it as a potentially blinding eye disease, even though it is. The inadvertent result of this is that the necessary resources and appropriate medical care are not provided in cases that require it. These resources are not only material, such as treatments and assistive tools, but also robust information and support attenuated to the particular needs of this population. In a situation like this, it is very important that patients learn as much as they can about their disease. In this way, they can acquire skills to manage it and communicate effectively with their physicians and loved ones. Patients with rare diseases often find themselves in the position of explaining their condition over and over again to others, including physicians and healthcare professionals, while facing disbelief and confusion. Disease is not only a medical phenomenon, but also a social and cultural one.

Important documents

It would be helpful to store all documents regarding your health in a folder and keep it in a safe place. This would help the doctors to manage your case well and save unnecessary lab orders. In this folder you should include copies of all lab results, tests and x-rays.

It would also be of great personal benefit to print the following documents provided:

a) Document to keep track of prescription drops. This may help you remember how many drops to use in your eyes per day, as prescribed by your doctor.

b) Systemic steroid record keeping document. This document is very important if you have been prescribed systemic steroids (pills). It would help you to keep a correct record of doses and their gradual tapering. It is especially important to keep it with you in case of an emergency requiring urgent care or surgery.

c) Systemic symptom record keeping document. This document was designed for patients with idiopathic uveitis, such as pars planitis. Uveitis can sometimes be the first symptom of autoimmunity for many patients. However, it may be associated with systemic autoimmune diseases that have not caused other symptoms throughout the body. This document provides some of the symptoms associated with systemic diseases that may develop over time.

d) Document for keeping medication records.

Recognize symptoms and visual disturbances

One of the factors that determine the prognosis of uveitis cases is the promptness of diagnosis and treatment. For this reason, it is extremely important that patients learn to recognize symptoms and visual disturbances related to uveitis so that they know when to seek medical attention. The appearance of these symptoms urges a visit to the emergency room or to an ophthalmologist specializing in ocular immunology and uveitis.

Acute anterior uveitis usually presents with pain, redness and sensitivity to light. It is not unusual for it to also cause some blurring of vision and to be accompanied by headache.

Chronic anterior uveitis usually causes no symptoms or very mild, almost imperceptible symptoms. For this reason, it is important to visit an ophthalmologist annually, especially in the case of young children.

Intermediate and posterior uveitis usually present with dark floating spots, blurred vision, loss of central vision and vision changes

Intermediate and posterior uveitis have a high risk of causing vision loss if not promptly managed, especially if the macula is inflamed. Therefore, it is extremely important to learn to

recognize all the symptoms of uveitis, the visual disturbances it causes and to seek medical

assistance as soon as possible.

You can see examples of visual disturbances and their most frequent indicators in the Vision

Simulator.

Observe the appearance of symptoms throughout the body

For many people, uveitis may be the first manifestation of an autoimmune disease. This often occurs in patients whose cases of uveitis are referred to as idiopathic at the time of evaluation. Therefore, if you belong to the group of patients whose uveitis is idiopathic or, more specifically, you were diagnosed with pars planitis, pay attention to the possible development of any of the following symptoms:

General symptoms

• General malaise

• Dropping objects unintentionally

• Any of the following sensations in some parts of the body, especially in the extremities and/or face:

• numbness, paralysis, tingling, "pins and needles", hot/cold, pressure, etc.

• Fainting

• Seizures

• Fatigue or excessive tiredness

• Dizziness or vertigo

• Loss of appetite

• Unintentional weight gain or loss

• Recurrent or persistent fever

• Cold or night sweats

• Inflammation of lymph nodes

• Loss of balance and/or coordination

• Sensitivity to sunlight or artificial light

Head symptoms

• Thinning or loss of hair

• Loss of pigment in the hair (white patches)

• Severe or frequent headache

• Scalp irritation

• Neck pain or stiffness

Auditory symptoms

• Tinnitus or "ringing in the ears".

• Hearing impairment or loss

• Severe or recurrent ear infection

• Inflammation of the earlobes

Nasal and oral symptoms

• Nose and mouth symptoms

• Dry eyes and dry mouth

• Recurrent or severe nose bleeds

• Sinusitis, nasal congestion and/or nosebleed

• Infection in teeth or gums

• Inflammation of the gums

Cardiovascular symptoms

• Chest pain

• Inflammation or swelling of the legs

• Easy or frequent bruising

• Easy or frequent bleeding

Respiratory symptoms

• Frequent or severe colds

• Recurrent or chronic cough

• Coughing up blood

• Recent viral infection

• Asthma

• Breathing difficulties or shortness of breath

• Bone and joint symptoms

• Pain, stiffness or swelling in the joints

• Back pain

• Low back pain

• Back pain when sleeping or waking up

• Muscle pain

Skin symptoms

• Ulcers in mucocutaneous areas of the body: mouth (aphthous ulcers), nose, genital and/or perianal ulcers.

• Decreased or loss of pigment in the skin or hair: vitiligo or poliosis

• Skin rashes, irritation or rashes

• Skin ulcers

• Itchy skin

• Acneiform lesions on the face or body

• Easy sunstroke on exposure to sunlight (photosensitivity)

• Inflammation of the skin of the legs: superficial thrombophlebitis or erythema nodosum

• Pain in the fingers or toes when exposed to the cold

• Change in color of fingers or toes when exposed to the cold

• Yellowish skin

Gastrointestinal symptoms

• Indigestion or gastrointestinal problems

• Difficulty swallowing

• Constipation

• Recurrent or severe diarrhea

• Blood in the stool

• Ulcers in the digestive tract: mouth, stomach, intestines, anus

• Indigestion or gastrointestinal problems

• Incontinence

Genitourinary symptoms

• Renal problems

• Urinary incontinence

• Blood in urine

• Urethral discharge

• Genital ulcers

• Prostatitis

• Testicular pain (epididymitis)

The onset of these symptoms is usually episodic and sometimes occurs during times of high stress. Therefore, they will not always be present. It is extremely important to report any of these symptoms to your ophthalmologist subspecialist in ocular immunology and uveitis. Download the Systemic Symptom Log under the Documents section.

Complying with treatment and attending medical appointments

The most important thing patients can do to manage uveitis is to comply with treatment and keep their medical appointments. Treatments should be completed according to medical recommendations. They should not be abandoned even if symptoms have subsided and you are feeling better.

Treatment for non infectious uveitis is non-specific. In more general words, the drug "treats the disease but does not cure it". Not all cases of non-infectious uveitis respond appropriately to corticosteroids and/or immunomodulators. For this reason, finding the most effective treatment can become a lengthy process, especially if the uveitis is idiopathic and has frequent recurrences. Some medications are more effective in combating certain diseases than others. So, uveitis may recur even when you are under treatment.

Knowing the cause of uveitis can help in choosing a more effective treatment and knowing the

prognosis of uveitis associated with the disease. However, finding the exact cause in idiopathic cases can be a lengthy process and a source of frustration and anxiety for patients.

What to do in case of uveitis reactivation

The reactivation of uveitis is unpredictable. Some cases are controlled under treatment while others are recurrent or chronic. Uveitis is a medical emergency, so you should consult with your ophthalmologist specializing in ocular immunology and uveitis about what you should do if you have an episode of ocular inflammation between previously scheduled appointments.

Occasionally, some patients may experience a first episode of uveitis that is successfully controlled under treatment. Months or years may pass without any reactivation of ocular inflammation. However, a new inflammatory episode may occur. In these cases, it is important to contact the physician who treated the first episode of uveitis again. If he/she is not an ophthalmologist specializing in ocular inflammation and uveitis, you should be referred to one so that he/she can manage any further reactivation.

Regardless of how much time elapses between episodes of uveitis, if you experience an episode again, it is recommended that you call your eye doctor's office and report your situation. If you cannot be seen by your doctor, it is important to go to the emergency room.

Active episodes of uveitis can significantly decrease visual acuity, resulting in "temporary blindness". This can impede the ability to read, write, drive, and perform other functions. It is important to establish a safe method of transportation, whether it is a loved one or another transportation service. The symptoms of uveitis may also be accompanied by intolerance to light (photophobia) and severe pain. In these cases, staying in a completely dark room or using an eye mask are the best complementary measures to medical treatment to alleviate pain.

Expectations: What can I expect?

Uveitis is an uncertain disease. This uncertainty stems from the fact that its diagnosis is not tied to a predetermined course: some cases may be acute while others are chronic. Other chronic diseases, such as diabetes or arthritis, are recognized by their predetermined chronic course. So both patients and physicians recognize the implication of their diagnosis from the moment it is made: it is a persistent disease, prolonged, requires extensive medical management, impacts quality of life, etc. This is not always the case with uveitis. In most cases, it is not so easy to recognize the course of ocular inflammation in a single appointment, just as the slope of a straight line cannot be established with a single point. The chronicity of uveitis cases is determined by the following factors: cause, duration and severity of the inflammatory episodes, age of the patients development of complications, degree of visual impairment. All these factors together will progressively determine the prognosis of the cases.

Another peculiarity of uveitis is that it is not a disease that can be treated or managed primarily through dietary or lifestyle changes. For example, celiac disease, diabetes or food allergies can be successfully managed through dietary changes, avoiding irritating foods that could exacerbate the disease. Other diseases, such as respiratory or cardiovascular problems, can be managed by removing or modifying the factors that cause health complications. These could be sedentary lifestyles, cigarette smoking or consumption of certain foods. So far, no isolated external variables have been identified that play a role in causing ocular inflammation. Most of the available evidence on homeopathic measures to alleviate uveitis is anecdotal (personal), not empirical-analytical. Therefore, the implementation of these measures does not guarantee improvement in cases of uveitis. Some people have reported improvement after implementing lifestyle changes, such as an anti-inflammatory diet (AIP), vegan, sugar-free or gluten-free diets, while others have not. Some people have reported improvement after including anti-inflammatory supplements and herbs in their diet, while others have not. However, this does not mean that "non-medicated" homeopathic and holistic alteratives can improve the health status of uveitis patients. Leading a lifestyle that promotes good health benefits everyone, whether a uveitis patient or not. Health is inherently holistic and reinforced through lifestyles that cover its multiple aspects: diet, physical activity, relaxation, quality of sleep, good interpersonal relationships, etc. All these factors together help to promote a good state of health.

Stress is another factor of concern for autoimmune disease patients. Most recognize that their symptoms arise or worsen during times of high stress, although this is not always the case. That is, the disease may manage to remain under control during a time of high stress or, vice versa, it may start to produce symptoms during times of relaxation, such as vacations. So far, no studies have been conducted that can corroborate the relationship between stress and uveitis. However, the medical community recognizes that chronic stress has a detrimental effect on everyone's health. Stress increases the activity of the sympathetic nervous system and this triggers a series of bodily reactions that are essential for immediate survival, but extremely harmful when they occur over a prolonged period of time. As with all the factors mentioned above, stress reduction can help to develop a better state of health.

For uveitis patients, the possibility of losing vision is a major stressor characterized by uncertainty. In addition, all the other difficulties presented by the disease also cause a great deal of stress, anxiety, fear or sadness. The limited information available and the low number of people with the disease make it more difficult to disseminate information to improve the quality of life.

Expectations about the disease

• Uveitis can be acute, recurrent or chronic. Recurrent or chronic uveitis requires long-term treatment and periodic evaluations. This could extend over months or years.
  

• Generally, recurrent or chronic uveitis has a period of increased inflammatory activity of approximately ten years. This general and inaccurate approximation is characterized by periods of inflammatory activity separated by periods of inactivity.
  

• Uveitis is an episodic disease. The ocular inflammation heals under appropriate treatment, but sometimes leaves sequelae that may compromise visual acuity and sharpness.
  

• Reactivation of inflammatory episodes cannot be predicted.
  

• Uveitis requires periodic evaluations. Appointments with an ophthalmologist specializing in ocular immunology and uveitis are scheduled for a certain number of weeks or months, depending on the severity of the case.
  

• Uveitis is a multidisciplinary practice and, therefore, may require multiple medical specialists. It is an ophthalmologic discipline that involves aspects of other medical specialties, such as rheumatology, neurology, immunology, etc.
  

• Cases of uveitis requiring treatment with immunomodulators may be referred to a rheumatologist. Similarly, cases that are caused by a systemic disease may be referred toanother specialist.
  

• Recurrent or chronic non-infectious uveitis is treated in a “stepladder approach”..
  

• For the eyes to return to normal and for eye discomfort to cease, a minimum of two years should pass without any inflammation.

Expectations in addition to the disease

• Treatments produce side effects that could impact quality of life and require responsible management. Most people and doctors do not know about the disease. For this reason, it is important that you educate yourself as much as possible about it. This way you will be able to effectively communicate your situation and acquire the most appropriate care.
  

• Many of the diseases associated with uveitis are very uncommon or rare. This brings with it other social and cultural complexities such as those mentioned at the beginning of this article.
  

• Idiopathic uveitis can cause bewilderment, confusion, anxiety and stress in patients. Although statistical evidence shows that it is very common, coming to terms with the fact that the cause of uveitis has not been identified can be a difficult process. Uncertainty is a phenomenon that induces emotions that are especially difficult for humans to process. Even so, therapeutic guidelines have been established for the treatment of all cases of uveitis.
  

• Mood may vary with the reactivation of uveitis. Mental and emotional care is as important as physical care.
  

• Time management for a person who is diagnosed with a chronic illness or one that causes an inability to perform normal activities is completely different from the time management of a person without it. Just as activities such as going to the gym or playing an instrument are time-consuming, chronic illnesses are also time-consuming on a daily basis. This includes taking medications, medical appointments, treatments, living with the discomfort of symptoms and side effects, among many other things.
  

• Uveitis, especially when chronic, leads to lifestyle changes.

Lifestyle changes

• Uveitis is a disease that forces patients to make lifestyle changes. Both the symptoms of the disease and the treatments and side effects of the disease require management that extends beyond the doctor's office. Lifestyle changes will be unique to each patient, but here are some general ideas regarding this disease.
  

• Sleep and rest well. This is an essential aspect of recovery from any illness. If you have the opportunity, arrange certain days to rest from work or studies. Also establish rest periods on your days off.
  

• Regardless of the severity of your case or your degree of visual impairment, implement accommodations in your work or academic environment. Do this from the first time you are diagnosed with uveitis, an initially acute case of uveitis may become recurrent or chronic. For this reason, it is important to take measures that fit your needs.
  

• Identify the tasks or functions that uveitis prevents you from performing normally during active episodes of inflammation. Implement alternatives and communicate your difficulties to those around you.
  

• If you suffer from any other chronic disease, take into consideration the implications of this disease on your health.
  

• If you are under immunomodulatory treatment, establish measures to help prevent infections or health complications.
  

• Consider seeking vision rehabilitation services or visiting a low vision center so they can provide you with skills or tools to manage your vision impairment. You can also find resources and tools on the Internet.
  

• The psycho emotional management of uveitis is as important as the management of the physical disease.

You can read the following publications if you want to leam more:

Accommodations in the work or academic environment for visually impaired people

Managing vision impairment

Side effects of treatments

Prevention tips for immunocompromised patients

Emotional toll of uveitis

Psycho Emotional management

Second opinion

It is normal to want to seek a second opinion. Not only might it help improve case management, but it can also help create a sense of security, confidence and emotional well-being. If you have the opportunity to seek a second opinion, here are some general situations that might prompt this decision:

• You are diagnosed with a chronic, aggressive, degenerative or terminal disease.

• You receive a diagnosis of pars planitis or idiopathic uveitis.

• Surgery recommended

• If you are a primary caregiver of a pediatric-aged patient.

• You feel dissatisfied with the management of your case.

• Treatments have been ineffective

• You feel worry, fear, doubt or apprehension before starting any type of treatment or surgery.