The goals for treatment of Sarcoidosis are to relieve symptoms and improve organ function.
Treatments for Sarcoidosis vary as much as the disease itself varies. Sarcoidosis patients are encouraged to maintain good health practices including eating healthy, getting enough sleep, exercising, not smoking and getting regular check-ups.
Your regular doctor may be able to diagnose and treat your Sarcoidosis, but diagnosis and treatment by a doctor who specializes in sarcoidosis is recommended. If you prefer to use your regular doctor, you should see a doctor who specializes in the organs that are affected by your sarcoidosis at least once. For example, see an ophthalmologist if your eyes are affected or a pulmonologist if you have Sarcoidosis in your lungs. These specialists are often found at major medical centers. They will work with your regular doctor to help make a diagnosis, develop a treatment plan, and schedule periodic exams and lab tests.
Your treatment depends on your symptoms, the severity of your symptoms, whether vital organs such as lungs eyes, heart and brain are affected.
Treatments for specific types of Sarcoidosis
- Eyes. Sarcoidosis in your eyes almost always responds well to treatment. Often, the only treatment you need is eye drops containing corticosteroids. You should have yearly eye exams, even if you think your eyes are doing well.
- Spleen. Sarcoidosis can cause your spleen to become larger. This can lead to a decrease in your red or white blood cells or platelets and increase your chances of infection and blood clotting disorders. Treatment is usually given to increase the number of your blood cells and ease your pain. In rare cases, your spleen may need to be removed.
- Liver. Sarcoidosis rarely causes permanent liver damage. As a result, your liver usually isn’t treated unless it’s causing major symptoms such as a fever. Drug treatment can usually reduce granulomas in your liver. Liver transplantation has been successful in those rare cases in which the condition has become worse. Followup care includes regular blood tests to find out how well your liver is working. You should check with your doctor to find out how often you need these tests.
- Nervous system. Sarcoidosis in your nervous system (Neurosarcoidosis) usually needs treatment. Nerve tissue heals slowly, so treatment often takes a long time. You may need to take several drugs at high doses.
- Erythema nodosum. These painful bumps on your shins often go away in weeks to months without treatment. Your doctor probably will not give you medication unless you are very uncomfortable. Aspirin or ibuprofen, an anti-inflammatory drug that you can buy without a prescription, will usually help.
- Heart. Sarcoidosis in your heart is usually treated with steroids. You may also be given heart drugs to improve your heart’s pumping ability or to correct a disturbed heart rhythm. If you have a severe heart rhythm disturbance, your doctor may prescribe a cardiac pacemaker, a small battery-operated device, often put under your skin, that regulates your heartbeat or a defibrillator, an implanted device that shocks your heart into a normal heartbeat or, if it has stopped, into beating. If your heart is severely affected and doesn’t respond to treatment, a transplant may be done. But this is rarely needed.
- Lupus Pernio. This rash on your face, especially your cheeks and nose, can be distressing because it’s in a very visible area. It often occurs with loss of your sense of smell, nasal stuffiness, and sinus infections.Treatment options include local treatment with skin creams, oral drugs or local injections of steroid preparations. Lupus pernio is often treated by dermatologists, doctors who specialize in skin diseases, working with a sarcoidosis specialist.
Because sarcoidosis varies so much among different people, your doctor may find it hard to tell whether the treatment is helping.
Drug treatment is very common to relieve symptoms and reduce inflammation of the organs affected by Sarcoidosis. Prednisone and other steroids commonly treat the inflammation and address fatigue and persistent coughing.
When used at high doses, prednisone can cause side effects from weight gain, high blood pressure, depression, difficulty sleeping, heartburn, acne to cataracts, glaucoma, adrenal gland insufficiency and aseptic or avascular necrosis, the development of cysts and hardened and dead tissue in the hip. Your doctor can usually help you manage these side effects.
Other drugs are sometimes used to treat Sarcoidosis. Most of these other drugs are immune system suppressants. This means that they prevent your immune system from fighting things like bacteria and viruses. As a result, you may have a greater chance of getting infections.
Other drugs used to treat sarcoidosis include:
- Hydroxychloroquine (Plaquenil). This drug can usually help people who have Sarcoidosis in the skin or a high level of calcium in their blood. This drug can irritate your stomach. It also can cause eye problems. Before starting on this drug, you should see an ophthalmologist or eye doctor, for some baseline tests. Once you start taking it, you should have your eyes examined every 6 months.
- Methotrexate. This drug is taken once a week by mouth or injection and usually takes up to 6 months to relieve symptoms. This drug may cause side effects, especially if you take high doses. These include nausea, mouth sores, a decrease in infection-fighting white blood cells. You then have a greater chance of getting an infection. If you take this drug, you should have regular blood tests to check the levels of your white blood cells. This drug can also cause liver damage. Taking folic acid can help you reduce your chances of having bad side effects from methotrexate.
- Azathioprine (Imuran). This drug may work in about half of the people who have sarcoidosis. You usually take it for at least 6 months. Side effects include: nausea, reduced white blood cell levels, which increases your chances of getting an infection.
This drug has caused cancer in some people, especially when they have taken it at high doses.
- Cyclophosphamide (Cytoxan). This is a very toxic drug. It is rarely used to treat Sarcoidosis. It is given only to people who have serious forms of sarcoidosis, such as Sarcoidosis in their central nervous system (Neurosarcoidosis). This drug is more likely to cause nausea and reduce your white blood cell levels than either methotrexate or azathioprine. Your doctor should check your white blood cell levels often while you are taking this drug to make sure you have a high enough level to fight infection. Cyclophosphamide can also irritate your bladder. Some people who have taken it for more than 2 years have developed bladder cancer. Cyclophosphamide can be given intravenously (through one of your veins), which lessens some of its side effects, but this doesn’t reduce the risk of cancer.
Most of these drugs also can cause serious side effects. Some also could increase your chances of getting cancer, especially if you take them at high doses.
Some drugs used to treat Sarcoidosis are taken by mouth. Others are applied locally to an affected area. Local therapy is the safest way to treat sarcoidosis. The drug is applied directly to the affected area. As a result, only small amounts of the drug reach other parts of your body. Drugs used for local therapy include eye drops, inhaled drugs for your lungs and skin creams.
It’s important to note that untreated sarcoidosis can result in permanent complications such as breathing difficulties, blindness, kidney failure and heart problems that can result in death.