Pemphigus: 10 tips for managing

Partner with your dermatologist

If you are unsure how to take care of your blisters and sores, ask your dermatologist.

Pemphigus can be a serious disease that changes your life. The following can help you manage life with pemphigus.

1. Try NOT to injure your skin. If you cut, bump, or injure your skin in any way, new blisters can form.

2. Take precautions to avoid infections. Blisters and sores leave you more likely to develop an infection. Many medicines taken to control the pemphigus also increase your risk of getting an infection because the medicines suppress your immune system.

To decrease your risk of getting an infection, keep all wounds, including cuts and scrapes, clean.

3. Understand that it can take time to get pemphigus under control. Some patients need months or years, but pemphigus is nearly always controllable.

4. Try to remain calm. Learning that you have pemphigus can be very stressful as can living with the symptoms. Stress, however, can worsen pemphigus. Finding things that help you combat stress can be immensely helpful.

5. Take care of mouth sores. If pemphigus causes sores in your mouth, you can ease the pain by:

   • Eating bland, soft foods. You want to avoid hard foods like chips, chunky peanut butter, nuts, crisp vegetables like raw carrots, and fruit. Other foods that can cause new mouth sores include spicy foods, steaming-hot foods, and acidic foods like tomatoes and citrus fruits.
   • Drinking beverages that don’t cause pain. Orange juice, hot tea and coffee, and spicy drinks can irritate your mouth, causing new sores.
   • Keeping your mouth clean. Poor oral hygiene can worsen mouth sores. Your dermatologist can recommend a toothbrush, toothpaste, and mouthwash that are least likely to cause pain.
   • Seeing a dentist who has experience working on patients with pemphigus. A dentist with this experience can take precautions to avoid new blisters.
   • Asking your dermatologist if a painkiller or anesthetic could help ease the mouth pain while you get pemphigus under control. Some people find these medications allow them to brush their teeth and eat.

6. Tell your dermatologist about eye problems. Blisters can form on the tissue lining an eyelid. Some people get pink eye with lots of mucus or crusts along their eyes. For a while, your eyes may become very sensitive to light.

If pemphigus affects your eyes, you may need to:

   • Wear glasses instead of contact lenses.
   • Wear sunglasses that protect your eyes from different types of light and ease light sensitivity.
   • Follow a treatment plan for your eyes.

7. Avoid sun and heat if you have pemphigus foliaceus or drug-induced pemphigus. If you’ve been diagnosed with pemphigus foliaceus or one of its subtypes, such as drug-induced pemphigus or fogo selvagem, you want to:

   • Avoid being out in the sun
   • Stay away from heat
   These can cause the blisters to spread, so you get blisters where you previously had none.

8. Learn more about pemphigus. The following websites can help you get started:

International Pemphigus and Pemphigoid Foundation
Provides hope and a new perspective for people living with pemphigus by offering patient support, personal stories, news, and more.



9. Connect with others who have pemphigus. People often find inspiration and hope by sharing experiences and connecting with others who have pemphigus. The following links allow you to ask a health coach who has pemphigus a question or meet others who have pemphigus:

Ask a coach
Pemphigus and pemphigoid community

10. Partner with your dermatologist. Your dermatologist can be your strongest ally. Dermatologists help patients with pemphigus find treatment that works. No one treatment works for everyone.

Your dermatologist can also help you manage possible side effects and answer questions about the disease.

If you remember only one thing from this site, it should be that today pemphigus is nearly always controllable. By keeping your dermatology appointments, you can partner with your dermatologist to make that a reality.

Images
Getty Images

References
The Marshall Protocol Knowledge Base, “Photosensitivity.” Last accessed 8.23.2016.

Stanley JR. “Pemphigus.” In: Wolff K, Goldsmith LA, et al. Fitzpatrick’s Dermatology in General Medicine (seventh edition). McGraw Hill Medical, New York, 2008: 459-74.

Zeina B. (DM Elston, editor). Pemphigus vulgaris. Medscape. Updated 8.12.2016. Last accessed 8.23.2016.