Pemphigus and pemphigoid (P/P) patients may agree that it can be very difficult and painful in the early months of their condition. As a pemphigoid patient, I learned how to apply dressings (large and small), developed a schedule of self-care, and adopted a clothing style and activity level that fit my needs. I discussed my care plan with my internal medicine doctor, dermatologist, dentist, dental hygienist, and oral surgeon, who all approved. The following suggestions may be helpful, such as learning how to care for our skin by taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable. Please review this article with your healthcare provider before implementing these ideas.
First, before purchasing any kind of care product, ask your dermatologist if they recommend using or avoiding anything specific. (Take into consideration any allergies, such as latex.) Check with your insurance company and see if they will help pay for any products. Many online stores may be cheaper and offer discounted prices. You may also work with your insurance company or Health Savings Account (HSA) when buying care products.
When applying or changing dressings, wash your hands with soap and water, and use gloves. In accordance with my dermatologist’s guidance, I kept my nails (hands and feet) short to avoid injuring my skin or spreading infection. (Please discuss applying any topical medications with your dermatologist.) For a small area, I applied topical steroid cream and Vaseline with a Q-tip. If it was a larger area (more than 4×4 inches) I squeezed a small film of both Vaseline and topical steroid cream onto my non-dominant gloved hand and applied the mixture onto the affected area with my dominant hand. My dermatologist had previously instructed me on the exact amount to use when applying topical steroid to avoid damaging the skin. Additionally, I made sure that the opening or mouth of the tube of medication didn’t touch my skin in order to avoid infection. Vaseline keeps damaged skin moist, and I still use Cetaphil cleanser and moisturizer when caring for my skin and hair (I find it very easy to use). I also use non-latex gloves when caring for my skin.
Both non-stick and regular pads come in various sizes and are easy on the skin. Gentle wrap bandages are also very easy to wear and they do not stick to skin or hair. Many product lines provide sensitive skin bandages and pads that are pain-free when removing. Gauze bandaging can help keep pads in place, and elastic stretch netting can help keep bandages and gauze in place. Lastly, gentle tape is a great product that adheres well to skin and removes easily. Make sure you review exactly how to use these and any products when caring for your skin–including how often to check and change your dressings–with your health care provider. I found it helpful to write down all instructions, medications, and medical products. I quickly learned which products worked well and whether to purchase them locally at a store, pharmacy, or online. I established a positive and team-focused relationship with three local pharmacies where I ordered my medications and care products.
I continue to work with my dentist, dental hygienist, and oral surgeon to manage my oral hygiene. I receive dental cleanings every four months instead of the typical six months from my dental hygienist per my oral surgeon’s guidance. I use soft children’s brushes to brush my teeth, soft dental floss, and a product called Biotene, which comes in various flavors. I gently brush my teeth after meals and floss once daily. I carry my dental products, medications, and any dressing products in a lunch bag; it’s very easy to carry, and it keeps all of my medical needs handy and discreet.
Like many P/P patients, I was misdiagnosed for months. As a result, a lot of my clothes were ruined. After I was diagnosed, the combination of added weight from various medications and dressings made wearing clothes hot and very uncomfortable. Wearing business clothes, slacks, skirts, sweaters, hose, blouses, and jeans made my skin hurt and itch even more! I found it helpful to wear lightweight, dark-colored athletic clothing with cooling wick technology. I wore dark colors because topical steroids stain and are very difficult to remove.
Over time my style changed to lightweight pullover athletic shorts, pullover short-sleeve shirts, large light long-sleeve shirts, athletic pants (no sweats or yoga pants), cotton underwear, and socks. I avoided button-down shirts, rings, watches, or jewelry. I made sure to wear hats and light coats and mittens outside. I learned that if my clothes let me breathe, felt cool and light–I had something to work with. I found wearing soft athletic sneakers and slippers worked best for me instead of shoes. We also kept our home cool, and I avoided exposure to heat or bright sunlight for extended periods of time.
My family and I developed a schedule after guidance from my medical team. We set up a cabinet in the bathroom that contained all of my medications, dressings, and medical supplies. My schedule included checking any areas of damaged skin (wound check), showering with lukewarm water and Cetaphil, changing dressings, and then changing into comfortable clothes. After this, I did another wound check on my mouth. I then gently washed my mouth out with cool water and brushed with Biotene using a soft children’s toothbrush. I found using a product called “magic mouth” helped greatly with my painful mouth sores. (This product can only be purchased with a prescription.)
I worked with a dietician to identify foods that both met my nutritional needs and kept me from gaining weight due to little activity and medication. My diet consisted of various soups, broths, frozen pops, and cooked soft foods. This helped a great deal, and I soon developed a menu. I took any medications by schedule and kept busy reading, watching TV and movies, doing word puzzles, art therapy, doing laundry, going on short walks, and following golf. Golf is a passion of mine, and it really helped divert my attention. Our church helped with visits, meals, and exploring my faith. I used meditation, stress relaxation, gentle yoga, calming music, and began seeing a licensed therapist. We also engaged with the International Pemphigus and Pemphigoid Foundation (IPPF), and they were the greatest help. I highly recommend that all new patients check out the IPPF’s Facebook page, Twitter account, website, and other amazing resources.
I tried to stay busy throughout the day while I was at home. Certain medications like steroids can play havoc on your sleep schedule. I worked with my doctor to identify medications that helped with itching, sleep, depression, anxiety, and mood swings. I found that taking my oral steroid medications early in the morning didn’t impact me as much at night during bedtime. Additionally, it also worked for me to take a low-dose oral antihistamine (Benadryl) twice a day.
I found that sleeping on a couch with light sheets and soft pillows helped me stay in a supported sleep position, which prevented me from rolling around all night and damaging my dressings. If I couldn’t sleep, I had a list of activities to do while not waking up my family. I also had medication if I couldn’t sleep or got too itchy. I recommend keeping your house (or at least a room where you spend your time in) cool, quiet, and filled with various activities like TV, movies, and books. This may be helpful during bedtime, and also relaxing on a bad day when a distraction is needed.
I used the Family Medical Leave Act (FMLA) to take time off from work. I stayed in constant contact with my employer, and as a result they were very supportive. I was able to return back to work several weeks later part-time, and then full-time. This was a decision that I made with my family and entire care team.
Over time, the long hours of wound care, special menus, dental care, sleepless nights, and meltdowns lessened since my diagnosis in February of 2016. Somewhere in the process, I learned what worked, developed new ways of coping and managing, and utilized resources. My family and I are very well-informed about bullous pemphigoid (BP), and we’re a part of the IPPF community. We’re not only living with BP–we’re thriving.