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Bullous pemphigoid: Self-care


If you think a medication may be causing a reaction, contact your dermatologist right away

Side effects can happen soon after you start taking a medication or weeks to months later.

Patient using telemedicine to talk with dermatologist

Taking good care of yourself at home may help blisters caused by bullous pemphigoid to clear more quickly. Good care can also prevent a serious infection. Here’s what dermatologists recommend for their patients who have bullous pemphigoid.

Protect your skin from irritation and injury

Bullous pemphigoid makes skin fragile. To help you get the best results from treatment, dermatologists recommend that you:

  • Try not to scratch. When you scratch, you can injure your skin.

  • Relieve an area of itchy skin with a cool compress. To make a cool compress, run a clean washcloth under cold water and wring out the washcloth so that water doesn’t drip. Then apply your cool compress to the itchy skin and leave it there for 10 to 20 minutes.

  • Protect your skin from the sun. If sunlight hits skin with blisters, sores, or rashes, this can be painful. If you need to be outdoors in the sun, protect your skin by seeking shade, wearing sun-protective clothing, and applying sunscreen that offers broad-spectrum protection, water-resistance, and an SPF of 30 or higher. Apply your sunscreen to all skin not covered by clothing.

  • Wear loose-fitting cotton clothing. This will reduce rubbing, which could irritate your skin.

  • Limit your activities until the blisters are under control. This means no contact sports, swimming, or heavy household chores. If you have blisters on your feet, limit walking.

  • Only pop or drain a blister if your dermatologist tells you to do so. When your dermatologist recommends draining a blister, you will receive instructions on how to do this safely. Without these safety precautions, you could cause a serious, and possibly life-threatening, infection.

Wash your hands

If you have germs on your hands and then touch a blister or skin where a blister just ruptured, you can develop an infection. Washing with soap and water helps to remove germs from your hands. The Centers for Disease Control and Prevention (CDC) provides information about when and how to wash your hands.

Look for signs of infection every day

Blisters and open skin can easily become infected. It’s important to watch for these warning signs of infection on your skin:

  • Warmth and swelling

  • Pain or tenderness

  • Pus

  • Red (light skin) or brown (dark skin) streaks

  • Yellow or golden crusts

  • Draining fluid

  • Unpleasant odor (new or worsening)

If you have an infection, you may also feel very hot or cold, or have a fever.

Take your temperature if you think you might have an infection. If your temperature is higher than 100.4° F (38.0°C), call your dermatologist or primary care physician. Tell the person who answers the phone that you have bullous pemphigoid and a fever.

If your skin looks infected, immediately call your dermatologist

Treating an infection early can prevent it from spreading and causing a life-threatening illness.

Follow your treatment plan

It can take several weeks for blisters to start drying up and new blisters to stop forming. When you don’t see results right away, you may be tempted to stop following your treatment plan. Continue with your treatment plan, making sure that you:

  • Take (or apply) all medication and vitamin supplements, as directed.

  • Care for your blisters and open sores (wound care), as directed.

  • Report possible side effects to your dermatologist right away.

  • Call your dermatologist right away if you have trouble following your treatment plan.

For more information about treatment, go to Bullous pemphigoid: Diagnosis and treatment.

Care for mouth sores

Some people who have bullous pemphigoid develop blisters in their mouth. When this happens, dermatologists recommend the following:

  • Eat only soft foods. This list of foods includes yogurt, mashed potatoes, and oatmeal. Food can be warm, but not hot.

  • Stop consuming foods and beverages that irritate your mouth. Anything that is spicy, acidic, crunchy, or hard might irritate your mouth and feel painful. Foods that can do this include raw vegetables like celery and carrots, crackers, potato chips, and raw fruits. Acidic beverages like alcohol, black coffee, orange juice, or soda pop can also irritate your mouth.

  • Use a soft toothbrush. This helps reduce irritation and possible pain.

  • Rinse with an alcohol-free antiseptic mouthwash. Dermatologists recommend rinsing with this mouthwash, as it helps to prevent infection and can help you feel better. Just make sure the mouthwash is alcohol-free, as alcohol can irritate the blisters.

Keep all follow-up medical appointments

You will need to see your dermatologist for follow-up care. During these visits, your dermatologist will:

  • Assess how well the treatment is working.

  • Check for possible side effects.

  • Look for signs of infection and pressure sores.

  • Make changes to your treatment plan if needed.

Your dermatologist will also coordinate with your primary care doctor. You may also need to see your dentist and other doctors. Some patients see:

  • A doctor who specializes in diseases of the head and neck (otolaryngologist)

  • An eye doctor (ophthalmologist)

  • Another specialist

It’s important that you keep all of these appointments, too. During your primary care visits, you’ll have your:

  • Blood pressure and blood sugar checked

  • Blood drawn to look for possible side effects from treatment

  • Checkup to look for signs of infection

Get support

Both people who have bullous pemphigoid and their caregivers can find it difficult to cope. If that describes you, help is available.

The International Pemphigus and Pemphigoid Foundation offers Peer Health Coaches (PHC). These coaches are people who have pemphigus or pemphigoid. They help more than 1,200 patients and caregivers each year.

The Foundation also offers support groups.

You can find out more about coaches, support groups, and this disease at the International Pemphigus and Pemphigoid Foundation.


Image
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References
Chan, LS. “Bullous pemphigoid.” In: Medscape (Elston DM., Ed.) Last updated 10/14/2020. Last accessed 7/9/2021.

Nadelmann E, Czernik A. “Wound Care in Immunobullous Disease.” IntechOpen. Published 5/9/2018. 10.5772/intechopen.71937.


Written by:
Paula Ludmann, MS

Reviewed by:
Arturo R. Dominguez MD, FAAD
Janet A. Fairley, MD, FAAD
Ivy Lee, MD, FAAD
Shari Lipner, MD, PhD, FAAD

Last updated: 9/21/21

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