Diseases > Behçet’s disease (BD) > What can I do about it?
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Behçet’s disease is a very serious illness. While there is no cure, it is treatable. Many people respond well to therapy. Behçet’s disease tends to flare. That means you may have periods where your symptoms are well controlled and other times they flare up again. It is also a disease that can be very different for each person.
If you have Behçet’s disease or think you may have it, your family doctor should refer you to a specialist immediately. It is important to be treated early and aggressively. A rheumatologist is one of the best people to help you manage your condition. Depending on your symptoms, you may need to see other doctors as well, such as a lung specialist (respirologist). Also consider attending a vasculitis clinic. Here, a medical team of experts in vasculitis diseases can offer a range of services and support.
Here are some other recommendations:
- Learn as much as you can about this disease. Knowledge is power and we’ve aimed to develop this RheumInfo website so it’s easy to understand
- Attend your rheumatologist and other medical appointments regularly
- Get your blood tests done as suggested by your rheumatologist
- Learn about the medications used to treat Behçet’s disease. The RheumInfo website has many tools to help you understand these medications
Treatment of Behçet’s disease
People with Behçet’s disease can lead active and productive lives with the right kinds of treatment. Whatever treatment approach is chosen, it is essential to remember two key points: treat Behçet’s disease early and treat it aggressively. Don’t wait. There are treatments available that can help get you back to leading a full life.
Why is it important to treat Behçet’s disease early?
Behçet’s disease is a very serious illness and the inflammation needs to be controlled quickly. You can think of Behçet’s disease like a fire in your blood vessels and organs. You want to get that fire put out as quickly as possible so it doesn’t damage your body. Once the damage from Behçet’s disease is done it cannot be reversed. We want to stop Behçet’s disease before it damages your blood vessels and tissues.
Why is it important to treat Behçet’s disease aggressively?
Using the same fire analogy, we’ve decided to call in the fire department. Now we need to make sure we have the right tools to put out the fire. We don’t want a bucket and water. We want a fire truck with a big hose. The faster we can get that fire out the less damage is done and the better things will be in the long run.
Medications for Behçet’s disease
There are many medications that can be used to treat Behçet’s disease. The choice of medications will depend on your specific symptoms.
Mouth or genital sores
For sores in the mouth or genitals, topical corticosteroid medications can be applied directly to the affected area. Another option is a medicine called colchicine, which can be taken orally. Prednisone can be used when topical medications and colchicine are not effective. Other immune modulating agents such as azathioprine (Imuran), cyclosporine, thalidomide, and anti-TNF medications can be used when prolonged high doses of prednisone are required.
For skin rashes, topical corticosteroid medications can be applied directly to the affected area. Another option is a medicine called colchicine, which can be taken orally. Prednisone is often used with colchicine for severe skin rashes. Other immune modulating agents such as azathioprine (Imuran) can also be used.
If the eyes are affected, steroid drops and dilating drops will be prescribed. In some cases oral steroids like prednisone may be required. If the disease is further back in the eye (posterior) other immune modulating medications are used.
Swollen joints may be treated with medications called Non-Steroidal Anti-Inflammatory Drugs or NSAIDs. Luckily there are about 20 different anti-inflammatory medications available. So if one doesn’t work for you, try another. Other systemic therapies used for arthritis include prednisone, colchicine, azathioprine (Imuran), methotrexate, and anti-TNF medications.
Vascular disease and other major organ involvement
Systemic prednisone is used for any serious organ involvement including vascular disease. Other immune modulating medications such as cyclophosphamide, cyclosporine or azathioprine (Imuran) can also be used to control symptoms and prevent long-term damage. These medications are effective, but may take a few months before the effects are felt. In more serve cases where other medications are not successful, a newer group of medications called anti-TNF biologics may be prescribed. Examples include infliximab (Remicade), adalimumab (Humira) and etanercept (Enbrel). A medication called thalidomide also has anti-TNF effects. When other organs are involved, combinations of the above medications are often used. For example, DMARDs can be used in combination with prednisone. Biologics are often given in combination with DMARDs or prednisone. This is because combination therapy has been shown to work better than treatment with either medication alone. Biologics may also help reduce the dose of prednisone that is used over the long-term.
In the short-term, prednisone works very well to rapidly control symptoms such as mouth and genital sores, eye inflammation and skin rashes. When used for long periods of time, prednisone can have side effects. You should to discuss the risks and benefits of using prednisone with your rheumatologist. Cyclophosphamide can increase your risk of infection. Cyclophosphamide can also affect your ability to have children.
For patients experiencing pain, analgesic medications can be used. They do nothing to control the disease or to prevent damage to tissues such as joints. Analgesics can range from simple things like acetaminophen (Tylenol) to more potent narcotics like morphine.
For more information about specific medications used to treat Behçet’s disease, refer to the “pictopamphlets” in the Medications section of this website.
Exercises for Behçet’s disease
Aerobic exercise such as walking, swimming or bicycling works your heart and increases your overall fitness and health. Regular physical activity can also help you deal with fatigue and is an important part of keeping a healthy weight. The level and amount of exercise you can do depends on the extent and activity of your Behçet’s disease. A good rule of thumb is to aim for 20-30 minutes of physical activity every day.
A trained arthritis physiotherapist can help design an exercise program tailored to you and your needs.
Read these useful articles on exercising with arthritis – many of the tips can also be applied to people with Behçet’s disease:
Natural or Home Remedies for Behçet’s disease
There are no known natural remedies or complementary therapies that have been proven to help Behçet’s disease in any significant way. However, it’s important to check with your rheumatologist to make sure that nothing interacts with your medication if you choose to use natural remedies or complementary therapies.
Behçet’s disease is a very serious disease that can be life shortening in extreme cases. It is important to use therapies that are proven to work. Natural therapies are not proven to work for Behçet’s disease.
Diet for Behçet’s disease
Questions about diet and Behçet’s disease are very common. We all want to know what we can do to help ourselves. Can we change our diet to help our condition? Changing our diet gives us a sense of control over a disease which often seems to have a mind of its own.
Unfortunately, there is no diet that has been proven to significantly alter the course of Behçet’s disease or other types of inflammatory arthritis. Eating well can help you keep a healthy weight and reduce your risk of diabetes, which can be associated with long-term use of prednisone.
Alcohol and Behçet’s disease
Many of us like to share a glass of wine, a beer or a spirit from time to time. Unfortunately, due to the nature of Behçet’s disease, some people may turn to alcohol to help cope with the distress. Alcoholic beverages are not an effective treatment for Behçet’s disease. They can also interact with some medications including methotrexate or azathioprine.
Smoking and Behçet’s disease
Cigarette smoking, whether you have Behçet’s disease or not, has no positive effects on any aspect of your health. Smoking and chronic inflammation are both recognized risk factors for heart disease. So if you are a smoker with Behçet’s disease, quitting could be one of the best things you can do to improve your overall health.
Behçet’s disease is a very rare but potentially life-threatening disease. It is a disorder that can affect every person differently. This can make it a hard to diagnose. It is extremely important to seek help from a rheumatologist. With early and aggressive treatment, the outcome can be positive.