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FAQs about pemphigus and pemphigoid
Questions nearly everyone asks sooner or later
There are many frequently asked questions (FAQs) about pemphigus and pemphigoid. Here some of the most common.
How did I get this?
Pemphigus and pemphigoid are autoimmune diseases, meaning that the patient's immune system mistakenly attacks the patient's own tissue and causes damage (disease).
What the triggers of autoimmune disease are is unknown, but many scientists are looking for them. There are genetic markers common among some patients, but these markers are are seen in relatively large numbers of people. No one knows why some people with these markers develop the diseases and some don't.
We do know that there are medications that cause pemphigus and pemphigoid, and that sometimes the disease resolves itself when the medications are removed.
Recently it has been determined that the autoantibodies that attack the skin cells may be in the body for up to 5 - 7 years before the first lesions (blisters) appear. We also know that high levels of stress sometimes trigger outbreaks. In some cases, exposure to high levels of sunshine can trigger or worsen flares. For a few patients, certain foods trigger or worsen outbreaks. Read: Cornering the causes of pemphigus and pemphigoid.
Will I die?
It is unlikely that you will die from either pemphigus or pemphigoid. If properly treated the prognosis for recovery is excellent.
Is there a cure? Will it ever go away?
At this time, all autoimmune diseases are 'incurable' but some patients do go into remission (no symptoms, or very mild symptoms).
There are two kinds of remission: one without medications, one with a varying amount of medication(s), called a clinical remission. Patients may need some amount of medication daily or every-other-day to control symptoms, while some may taper medications entirely between flares.
The length of remissions in pemphigus varies widely. Patients who develop pemphigus before puberty are more likely to go into a long remission.
Pemphigoid patients go into long remissions more frequently, sometimes lasting the rest of their lives, and this happens in approximately 50% of the cases reported.
Is it contagious?
Neither disease is contagious, in fact it is extremely rare for one patient to ever know another patient, except through support groups.
Will my children develop pemphigus? Pemphigoid? What if I get pregnant?
It is extremely unlikely that children of patients will develop either disease. There are genetic markers in many people, including some family members, but it is unknown why so few people develop pemphigus or pemphigoid.
In some rare cases babies are born with pemphigus if the mother has it, but in nearly all cases the lesions clear rapidly and do not return. There is a disease called pemphigoid gestationis, (or by the misnomer herpes gestationis) which is similar in appearance to pemphigoid. However, this is highly treatable and most often resolves itself in a relatively short time.
Getting pregnant while on high doses of steroids is not a good idea, however. Anyone contemplating a child should speak with one of our Medical Advisors first, or another expert in pemphigus and pemphigoid. In most cases, having pemphigus or pemphigoid is not a serious problem.
Is pemphigus or pemphigoid disabling?
Sadly, in some cases they are. Pemphigus and pemphigoid result in flares (the skin and/or mucous membranes break out in blisters), which can be severe and disabling. These attacks may--or may not--last long enough to make a patient eligible for disability assistance.
The medications are as troublesome as the disease in some cases, and may be disabling in themselves. (However, patients are cautioned that the side effects of the medication are generally not as dangerous as the disease which can become life threatening.
If the side effects of the medications become a problem, patients should bring this to the doctor's attention. In many cases there are medications for side effects, or 'work-a rounds' which reduce them. It is very important that patients, especially those on prednisone, should become familiar with the side effects and discuss them with the doctor so you both may monitor the situation and avoid serious problems.)
If financial assistance is needed, we suggest you speak with your doctor about what programs may be available. (In the United States, check your local phone book for Social Security Administration.) Persistence is often necessary. In some cases, an attorney may be helpful.
I read about (name an herb or supplement) that is supposed to (enhance or balance) the immune system. Should I try it?
In pemphigus and pemphigoid patients, the immune system is already overactive, so it would be fool-hearty to take anything that claims to enhance it.
In short, there are no herbs or supplements scientifically recognized to reduce or "cure" or even help treat pemphigus or pemphigoid. Some herbs have been implicated to actually cause flares and should be avoided entirely.
Bogus claims are rampant on the Internet and in print and patients desperate for relief are often easy prey for such claims. In short, stick to the proven methods of treatment prescribed by a physician familiar with pemphigus or pemphigoid and leave experimentation to the scientists in reputable laboratories. More on nontraditional treatments here.
Can I give blood or donate my organs?
Pemphigus and pemphigoid patients are barred from giving blood or donating organs.
Should I get a flu shot?
This may be the most frequently asked question and the answer is, yes-- get a flu shot if you are not allergic to them.
Additional FAQs are found in PPS Patient Guides and we cover many problems patients develop in news and information articles in Recovery. Past articles can be found in the Article Archive. If you cannot afford a membership, we'll give you one free--just contact us with your request.