Pemphigus Vulgaris and You

Pemphigus vulgaris is a blistering disease. It sometimes produces blisters that look like pimples, but it’s not caused by infection. Instead, phemphigus vulgaris is an autoimmune condition that can result for hyperactivity of the immune system after dealing with a serious infection—including acne. Treatments that work for acne, however, won’t work for pemphigus vulgaris.

What Is Pemphigus Vulgaris?

Pemphigus vulgaris gets its name from the Greek word pimphex, meaning blister. It is an autoimmune disease that almost exclusively affects middle-aged people. Jews of German origin (most Jews in the United States) are much more likely than other groups to develop this skin condition than other groups. It is also relatively more frequent in people of Mediterranean descent.

Pemphigus vulgaris is almost unheard of children and teens and it is uncommon in the elderly. This condition usually occurs after some kind of trigger. That trigger may be treatment with blood pressure medications in the angiotension receptor inhibitor (ACE-inhibitor) class, usually medications with names that end in -il, such as lisinopril or ramipril. It also occurs after treating with a medication called penicillamine, which is most commonly used to treat rheumatoid arthritis.

The blisters caused by this condition begin in the mouth and then spread to the face, scalp, and trunk. They tend to ooze and peel. They are easily detached. They can be as dangerous to health as severe burns, and 5 to 15% of people who develop pemphigus vulgaris die of the disease.

The Difference Between Pemphigus Vulgaris and Severe Acne

The blistering of the skin in the second stage of pemphigus vulgaris is sometimes mistaken for severe acne. Acne, however, never begins with mouth sores. Also, acne usually involves hardened plugs of dried sebum that clog pores. They are hard to remove. Pemphigus vulgaris is not limited to pores. It makes the skin easy to pull away, leaving raw, exposed tissue beneath.

Also, while acne is treated on the skin, pemphigus vulgaris requires whole-body therapy. The most important therapies are designed to stop the immune system’s attack on the skin.

Treatments for Pemphigus Vulgaris

The way pemphigus vulgaris destroys the skin is by releasing a specialized antibody. Instead of attacking a germ, this antibody attacks adhesion molecules. These molecules serve as the “glue” that keeps the keratinocytes that make collagen attached to the rest of the skin. Breaking down the naturally occurring adhesive that keeps these cells in place not only loosens the skin, it also deprives the skin of the collagen it needs to repair itself.

The way doctors fight this kind of antibody reaction is to try to shut the whole immune system down. They used to give pemphigus vulgaris patients chemotherapy drugs or gold treatments. They attempted to control the inflammation with steroids. Some doctors still use steroids, but people who have pemphigus vulgaris are more likely to be treated with a drug called dapsone (which is also used in some cases of celiac disease) that , or a drug like rituximab, which binds to the antibody that causes skin tissue to break down. Dapsone costs about $5 a dose. Rituximab costs up to $500 a dose. However, even in the USA, both drugs are covered by insurance.

Supportive Therapies for Pemphigus Vulgaris

Natural medicine is never enough for recovery from pemphigus vulgaris, and the wrong natural treatments can do more harm than good.

It’s especially important to avoid any herbal therapies that increase the body’s production of antibodies. People who have pemphigus vulgaris should never take echinacea, wild indigo (baptisia), or any other immune stimulant herb. They also need to avoid any kind of treatment that breaks up the outermost layer of the skin.

Time and time again on this website we recommend the use of alpha- and beta-hydroxy acids, such as glycolic acid and salicylic acid, to break up dead skin and to stimulate the growth of collagen underneath the skin. The problem in pemphigus vulgaris is that the outermost layer of skin is all that is holding it together, and if the keratinocytes are destroyed by the disease, there is no way to stimulate them to accelerate healing.

Frequently Asked Questions About Pemphigus Vulgaris

Q. Is pemphigus vulgaris always fatal?
A. No, from 80 to 95% of people who get the disease recover from it.

Q. How long does it take to get over pemphigus vulgaris?
A. It usually takes about six months for your doctor to figure out the right combination of medications to control the blistering, and it usually takes about two years for the blisters to stop returning.

Q. Can I ever stop taking my medications on my own?
A. Absolutely not. Your meds may be keeping you in remission. Stopping them make cause blistering to resume very quickly.

Q. What can I do about the nausea the medications make me feel?
A. Try acupressure. Grab the webbing of the skin between your thumb and index finger and gently squeeze (assuming it’s not blistered). Or try wearing a travel band, which is based on acupressure principles. Some people get relief from ginger ale or ginger capsules.

Q. Will my kids also get this disease?
A. Probably not. It results from a combination of a genetic predisposition and exposure to a triggering event or triggering medication.

Q. Is it safe to get sun if I have pemphigus vulgaris?
A. Chances are you will need to use a mineral sunblock, a preparation made with either zinc oxide or titanium dioxide. The medications reduce the ability of your immune system to protect you against skin cancer. Since you won’t be getting much sun, it’s important to take a vitamin D supplement, up to 1000 IU a day or even more, to help protect the health of your bones.

Q. What is the difference between an erosion and an ulcer?
A. Both an erosion and an ulcer occur where the top layer of skin is missing. Your doctor may also refer to these places on your skin as lesions. All three words mean basically the same thing.

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