FAQs

If properly treated then the prognosis for recovery is excellent. At this time there is no cure. The IPPF supports the work of many researchers who are busy in labs in many nations studying pemphigus and autoimmune disease in general. Pemphigus, like all autoimmune diseases, not contagious. In fact it is extremely rare for one patient to know of another patient with pemphigus except through support groups.

Candida (candidiasis) is a group of yeasts (fungi) normally found on mucous membranes or the intestines. Immunosuppressant medication sometimes allows this yeast to grow beyond normal levels. Candida can affect the mouth (thrush), the genitals, finger and toe nails, folds of the skin, and the anus. This condition usually responds quickly to medications. Some patients take acidophilus tablets, drink acidophilus milk or eat yogurt with live cultures as preventative measures.

Yes, flu shots are usually recommended for pemphigus patients and their caregivers but check with your physician first. There are some indications that high drug doses might make the normal shots ineffective. But, they are recommended in any case. In general, vaccinations containing a dead virus are considered safe; live viruses are not. (Polio and small pox vaccinations contain live viruses.) Patients with suppressed immune systems should avoid live viruses or those who have recently been vaccinated with a live virus.

Immediately. As soon as possible have a bone density test. Much, if not most bone loss, is reported to occur in the first 6 months of taking prednisone. A dosage as low as even 5 milligrams per day has been shown to cause osteoporosis in some patients. Most patients, especially women starting menopause, should take calcium supplements with vitamins. Exercise, especially weight-bearing exercise, is recommended. Check with your doctors before beginning an exercise program.

Not necessarily. Reports are that immunosuppressed patients have a higher risk for infection, but the frequency of colds and flu should not be much elevated. Patients should tell the doctor about chicken pox or tuberculosis (active or not as it could reactivate), and any herpes infection.

Pemphigus and pemphigoid can be affected by the sun. Some sunshine is important for good health, but prolonged exposure to the sun, or even short exposure to intense sunlight or ultraviolet rays, can be a problem for patients on prednisone or antibiotics. Medications such as these can make a patient more susceptible to sunburn and may reduce the effectiveness of some drugs. Protective clothing and sun block are recommended.

Fatigue very often comes with the use of prednisone and immunosuppressive drugs. They have been shown to sap strength, and prednisone might cause muscle deterioration. Plus, prednisone often upsets the natural sleep cycle so the mind and body don’t get the rest needed. Balancing daily life when ill is a struggle. Keep your routine as regular as possible, but don’t feel guilty about taking breaks or naps whenever you desire. You can help the situation by reducing your workload, (either by prioritizing or delegating chores), and taking time to relax regularly. Spend your energy wisely. Don’t over do work when you do feel stronger to “make up for lost time.” This may further polarize your energy cycle. Eat right. Exercise.

In this age of computers and the Internet there is no shortage of reading matter. However, it is important to keep a few questions in mind when evaluating information. 1) Who wrote it? Is it a reliable source? Be careful; some sources only sound reliable. 2) What are others saying on this subject? Is this information supported by other reliable sources? What is the consensus? 3) Where’s the proof? Are there multiple scientific studies done by unbiased reliable sources? Is this a snake-oil presentation of wild claims and fancy sounding words? 4) When was it written? Is it old information? Is it out of context? Incomplete? 5) Why was the information written? Is it a published report in a medical journal? Was it written to support an advertising pitch? 6) How can you check the facts? Be skeptical. And be doubly skeptical if the people giving you information are also trying to sell you something. Remember: Buyer beware, and if it sounds too good to be true, it probably is.

If lesions are emitting fluids, they can have an unpleasant odor. When the lesions are cleared, the smell should disappear.

One common way to reduce the cost is by switching to a generic brand. Check with your doctor or pharmacist. If you are a veteran, check with the Veterans Administration. Perhaps you can join an organization which offers members a discount on medication, such as The American Association of Retired Persons (AARP). Check to see if buying more at one time, or buying smaller amounts of medication more often can save you money. You can also check with your county health department to see if you are eligible to get medical treatment at reduced rates. Another organization that may help is the National Council on the Aging. Finally, most drug manufacturers have a plan where patients can get medication at reduced prices or even free. This is not usually easy and sometimes your doctor has to make the effort, but it certainly worth checking into.

No.

The word "auto" is the Greek word for self. The immune system is a complicated network of cells and cell components (called molecules) that normally work to defend the body and eliminate infections caused by bacteria, viruses, and other invading microbes. If a person has an autoimmune disease, the immune system mistakenly attacks self, targeting the cells, tissues, and organs of a person's own body. A collection of immune system cells and molecules at a target site is broadly referred to as inflammation.

There are many different autoimmune diseases, and they can each affect the body in different ways. Pemphigus vulgaris, the most common of the pemphigus diseases, effects the skin and mucous membranes. In multiple sclerosis the autoimmune reaction is directed against the brain. In Lupus, one person may have affected skin and joints whereas another may have affected skin, kidney, and lungs.

Ultimately, damage to certain tissues by the immune system may be permanent.

The immune system defends the body from attack by invaders recognized as foreign. It is an extraordinarily complex system that relies on an elaborate and dynamic communications network that exists among the many different kinds of immune system cells that patrol the body. At the heart of the system is the ability to recognize and respond to substances called antigens whether they are infectious agents or part of the body (self antigens) Most immune system cells are white blood cells of which there are many types. An antibody binds to an antigen and marks the antigen for destruction by other immune system cells.

The diagnosis of an autoimmune disease is based on an individual's symptoms, findings from a physical examination, and results from laboratory tests. Autoimmune disease can be difficult to diagnose, particularly early in the course of the disease. Symptoms of many autoimmune diseases – such as fatigue – are nonspecific.

In some cases, A specific diagnosis can be made. A diagnosis shortly after onset of a patient's symptoms will allow for early aggressive medical therapy; and for some diseases, patients will respond completely to treatments if the reason for their symptoms is discovered early in the course of the disease.

Although autoimmune diseases are chronic, the course they take is unpredictable. A doctor cannot foresee what will happen to the patient based on how the disease starts. Patients should be monitored closely by their doctors so environmental factors or triggers that may worsen the disease can be discussed and avoided and new medical therapy can be started as soon as possible. Frequent visits to the doctor are important in order to the physician to manage complex treatment regimens and watch for medication side effects.

The immune system normally can distinguish "self" from "non-self." Some lymphocytes are capable of reacting against self, resulting in an autoimmune reaction. Ordinarily these lymphocytes are suppressed. Autoimmunity occurs naturally in everyone to some degree; and in most people, it does not result in diseases. Autoimmune diseases occur when there is some interruption of the usual control process, allowing lymphocytes to avoid suppression, or when there is an alteration in some body tissue so that it is no longer recognized as "self" and is thus attacked. The exact mechanisms causing these changes are not completely understood.

Prednisone may distort lab tests. Allergy tests and tuberculosis tests will be invalid. Pap smears may be misinterpreted as cervical dysplasia. Tests for tuberculosis and cancer may also be affected. Other medications may also interfere with test results. If you have questions consult your doctor or pharmacist.

Not necessarily. Reports are that immunosuppressed patients have a higher risk for infection, but the frequency of colds and flu should not be much elevated. Patients should tell the doctor about chicken pox or tuberculosis (active or not as it could reactivate), and any herpes infection.

The area around a wound must be kept clean and reasonably moist. When the dressings are dirty, they need to be replaced promptly. Leaving bandages on too long can slow the healing process and encourage infection. Replace any dressing when fluids soak through. This is called bleed-through and ideally, bandages should be changed before this occurs. Bleed-through increases the danger that a bandage will adhere to the wound. When this happens, soak the dressings and coax it off gently. The frequency of dressing changes depends on the wounds and the dressings applied. Talk with your doctor or nurse to familiarize yourself with the correct treatment protocols.

Fatigue very often comes with the use of prednisone and immunosuppressive drugs. They have been shown to sap strength, and prednisone might cause muscle deterioration. Plus, prednisone often upsets the natural sleep cycle so the mind and body don’t get the rest needed. Balancing daily life when ill is a struggle. Keep your routine as regular as possible, but don’t feel guilty about taking breaks or naps whenever you desire. You can help the situation by reducing your workload, (either by prioritizing or delegating chores), and taking time to relax regularly. Spend your energy wisely. Don’t over do work when you do feel stronger to “make up for lost time.” This may further polarize your energy cycle. Eat right. Exercise.

One common way to reduce the cost is by switching to a generic brand. Check with your doctor or pharmacist. If you are a veteran, check with the Veterans Administration. Perhaps you can join an organization which offers members a discount on medication, such as The American Association of Retired Persons (AARP). Check to see if buying more at one time, or buying smaller amounts of medication more often can save you money. You can also check with your county health department to see if you are eligible to get medical treatment at reduced rates. Another organization that may help is the National Council on the Aging. Finally, most drug manufacturers have a plan where patients can get medication at reduced prices or even free. This is not usually easy and sometimes your doctor has to make the effort, but it certainly worth checking into.

In order for patients with pemphigus and pemphigoid to get control of their disease, there are certain drugs that patients must take. Prednisone is the first drug of choice for treating these diseases, and immunosuppressive drugs are often given as well to help patients reduce the doses of corticosteroids (prednisone/prednisolone).

In order for patients with pemphigus and pemphigoid to get control of their disease, there are certain drugs that patients must take. Prednisone is the first drug of choice for treating these diseases, and immunosuppressive drugs are often given as well to help patients reduce the doses of corticosteroids (prednisone/prednisolone).

In order for patients with pemphigus and pemphigoid to get control of their disease, there are certain drugs that patients must take. Prednisone is the first drug of choice for treating these diseases, and immunosuppressive drugs are often given as well to help patients reduce the doses of corticosteroids (prednisone/prednisolone).