Ocular sarcoidosis: eye inflammation caused by sarcoidosis

Sarcoidosis is a condition in which clusters of inflammatory cells form tiny lumps called granulomas in one or more organs. The NHS says it often affects the lungs and lymph nodes and can also affect the skin, and that symptoms depend on which organs are involved. NICE CKS describes it as a multisystem disease of unknown cause, characterised by non-caseating granulomas.

Ocular sarcoidosis is the term for involvement of the eye or the structures around it. It can occur in someone already known to have sarcoidosis elsewhere, or it can be the first sign. The eye problem most commonly seen is inflammation of the uveal tract, called uveitis, which NICE CKS describes as inflammation of the iris, ciliary body and choroid, sometimes with inflammation of nearby tissues such as the retina, optic nerve and vitreous.

The NHS lists red or sore eyes among the symptoms of sarcoidosis. For uveitis it lists eye pain that may feel worse when reading, red or watery eyes, reduced or blurred vision, sensitivity to light, and lights in the corner of the eyes or dark spots, flashes and floaters. It says uveitis usually affects one eye but can affect both, and symptoms can develop over hours and days or more gradually over weeks and months. Sometimes there are no symptoms.

NICE CKS adds that the pattern depends on which part of the eye is involved. Acute anterior uveitis typically causes pain, redness, photophobia, blurred vision and watering. Intermediate and posterior uveitis tend to cause blurred vision and floaters, with little pain and little redness, which is why they can be missed without an eye examination.

The NHS says to ask for an urgent GP appointment or get help from NHS 111 if you have pain in your eyes, sensitivity to light, changes in vision such as flashing or blurring, or very red eyes in one or both eyes. It says to go to A&E or call 999 if you cannot see (loss of vision).

The urgency is because uveitis can damage the eye if left untreated. The NHS says it is important to get it treated early to avoid long-term complications such as vision loss and blindness. Do not wait for a scheduled sarcoidosis clinic appointment if your eyes become painful or your vision changes.

Uveitis is confirmed by an ophthalmologist. NICE CKS says the diagnosis must be confirmed by slit-lamp examination of the front of the eye and a dilated examination of the back of the eye, which are not normally available in primary care. The NHS says that if a GP thinks you have uveitis you will be referred to an eye specialist and will usually be seen within 24 hours.

If sarcoidosis has not been diagnosed, the eye doctor will often look for it. The NHS says that if doctors think sarcoidosis may affect other organs such as the skin, heart or eyes, scans or examinations of these areas will usually be carried out. NICE CKS says people with suspected sarcoidosis should be offered a chest X-ray, and that lung function tests, blood tests and a 12-lead ECG may help confirm the diagnosis. A biopsy of an affected tissue showing granulomas is a key piece of evidence.

NICE CKS notes that people with findings consistent with sarcoidosis should be referred to an appropriate specialist who will confirm the diagnosis, decide whether treatment is needed, and arrange monitoring.

Treatment aims to settle inflammation and protect vision. The NHS says people with uveitis are usually prescribed a combination of medicines to get rid of any infection, reduce inflammation, and relax the eye and reduce pain. For sarcoidosis, including eye involvement, NICE CKS states that first-line treatment is usually corticosteroids, topical or oral, with immunosuppressants second-line and biologics third-line.

For very severe or recurring uveitis, the NHS says treatment may also include immunosuppressants and TNF inhibitors, laser phototherapy, cryotherapy or surgery on part of the eye. Steroid treatment has side effects. For sarcoidosis generally, the NHS lists weight gain and mood swings at high doses, and weakening of the bones (osteoporosis) with long-term use, so steroids are used only when necessary, often starting at a higher dose for a short period and then reducing.

Many people with sarcoidosis need no treatment for their general illness. The NHS says many do not need treatment because the condition often goes away on its own, usually within a few months or years. That does not apply to eye inflammation, which is generally treated.

After treatment starts, the NHS says you will be seen again by an ophthalmologist to see how treatment is working, check for side effects and check for complications such as vision loss. Uveitis can come back, so ongoing follow-up is usual.

NICE CKS says people with significant extrapulmonary involvement, which includes the eyes, require long-term monitoring at least every 6 months, and that people withdrawing from corticosteroid treatment also need ongoing monitoring. In practice, you may be seen by an eye specialist for the eyes and by a respiratory or sarcoidosis specialist for the wider condition.

NICE CKS says approximately two-thirds of people with sarcoidosis experience remission within 2 to 5 years, the majority requiring no treatment, while in 10 to 30% of people the disease becomes chronic and requires prolonged treatment. The NHS says that for some people the condition slowly gets worse over time and leads to organ damage.

For the eyes, the practical message is early recognition. People known to have sarcoidosis are generally advised to report new eye redness, pain, blurred vision or floaters promptly rather than waiting. The NHS lists lifestyle measures that may help with sarcoidosis generally: stop smoking, eat a balanced diet, maintain a healthy weight, reduce stress, exercise regularly and get enough sleep. Sarcoidosis UK, which the NHS points to, runs support groups.